It's been a long few months. To say that Landen, Olivia and I are more than ready for our winter break from school, is a vast understatement. Christmas has come so quickly and between all the holiday activities and traditions we do, added to trying to finish out the semester strong, to be a teacher, a mom, a homemaker, what often feels like a medical professional . . . it's been so busy, too busy.
The holidays are wonderful, albeit a bit stressful. Every year I continue to get the emails from the CFF about "staying healthy this holiday season while celebrating with family". Opening those emails isn't really a reminder or a new sting, it's the way we live our lives everyday, but maybe this year the slap is a bit harder, because with schooling online at home, we are already doing all we can to keep Olivia healthy aside from just living. Maybe it's the reminder that CF is ever present and a big deciding factor in every thing we do or maybe it's the fact that Olivia is now 7, living with a progressive disease that each year wreaks more havoc. Maybe it's the fact that we have 1 hospital stay under our belt already and know that another one will arise - not an if, but a when. Maybe it's the fact that it seems we just can't catch a break lately. I'm not sure, it's just been a lot. A very trying and testing time as of late.
Olivia finally overcame her fear of choking and dying. Once we started the periactin back up she had an appetite and was hungry so she actually just ate without having the mind games affect her eating. One hurdle cleared.
A few days later, we got Olivia's culture report and she had again cultured staph as well as a new bacteria she's never had before, klebsiella. This isn't pseudo or b.cepacia but still, it's another thing. I've been told it's not a bacteria that usually causes pulmonary problems but if you know us "probably" never sits well, we've had too many situations where the "probably" has turned into a for sure thing. There is nothing to do about it since she's healthy and I was told the staph would be treated if she were symptomatic as compared to the other. So Jeff and I pondered the new bacteria and figured that given the fact that the new bacteria "probably" won't cause symptoms and that Olivia is healthy right now is the best we can hope for. Just typing those words and saying them really sucks, to have to live and have the mindset of "it's the best we can hope for" when it comes to your daughter's health really does suck. But, in order to stay sane and keep going, what else honestly can we do, aside from accept and move on. And in true fashion of not catching a break, Olivia had 1 ear infection a month ago and finally was able to hear again out of both ears for a little bit only to tell us us Monday her ear was clogged, again. Another visit to our ENT to find out she has another ear infection in the same ear. 10 more days of ear antibiotics. Oh the joys of CF.
Yes, it's been a lot. Yes, we are ready for a break and to catch a break.
However, for all that we go through and all that we deal with and for how down times can be, I always know it could be worse. The stories I hear about those this holiday season who are celebrating without a loved one, or those that have been recently diagnosed with cancer or something else, there are so many crummy, crummy things. Olivia herself will remind us when she's in the hospital or clinics and sees small kids going through chemo, fighting for their lives, how sad it is, how unfair life can be. Seeing others fighting like hell against diseases that are trying to take their lives too, most certainly doesn't make one feel better, it just adds to the crack in our hearts a bit more. Yes, life most certainly can be and seem very, very unfair at times.
Last night Olivia asked me, I think for the first time, if she could die from CF. I told her yes. She gave me a look of huh? and I clarified. I told her, "You aren't going to die today from CF. You aren't going to die tomorrow from CF. We work hard everyday to keep your lungs healthy and to keep you healthy". I told her that her lungs would need to be very, very sick. She quickly asked me, "Like when I was in the hospital?" I told her that yes, her lungs were very sick when she was in the hospital, but she got better, her lungs are better and we are going to keep working to keep them healthy. I told her that she would likely not die from CF for a very long time and followed it up with the fact that we can't live in fear. I told her that I could die tomorrow of something. I told her anyone of us could, and said that we can't let that scare us out of living. I told her that everyday we do all we can and will continue to do all that we can to keep her healthy, always. She seemed content with that and continued to finish all of her supper.
She's wise for her age, my Olivia, yes she is.
So as we push through to finish up our last day of school before break, (yippee) we are going to work hard, have fun doing it and celebrate our winter break tonight. The kids anxiously look ahead to the magic of Christmas and celebrating Jesus' birth. We look forward to rounding out 2016 with a big bang and a fun vacation and look ahead to 2017 with optimism and hope for a blessed new year. As we look back on 2016, we know we are blessed for the year we have had together, the memories we have made and will never forget.
Today, what I really want to say and what I actually say are aligned:
I wish you all a very Happy Holiday Season and a Blessed 2017.
May your blessings be great and may you never take time for granted.
Here's a picture walk of 2016.
February - The CF Climb
March - Awards at Sunrise
A Mother's Day we'll never forget.
Olivia's Kindergarten Graduation
June 2016 - We said goodbye to our beloved Shelby
April 2004 - June 2016
Last Day of school June 2016
My Broken Elbow
Landen's 9th Birthday
July - Enjoying Summer
May, June, July, August . . . Dirt Biking
June, July & August - Swimming
August - Starting and Finishing off the Schoolroom
First day of 1st and 3rd Grade - August 2016
September - Twins Game
October - Olivia's 7th Birthday