Friday, November 11, 2016

Reflections

We live in a smaller community, when something happens to someone, the news spreads around the town like wildfire. On October 1st, Olivia's birthday, a young man was in a very bad atv accident.

I heard of this family's story at dance class and at martial arts class. As I drove through town, I saw words displayed on the McDonald's sign, the County Market sign, the city sign, cheering on and in support of this young man. An entire community rallying around the hope, faith and healing for this family. I followed along with the family's journey over the past weeks through the caringbridge website that they set up. I prayed for the family, was amazed by the undying and strong faith this family had while faced with the unexpected and as I read, so many of the words that this young man's father wrote in his journal entries were words that pulled at my heart strings.

What amazed me the most was the strong faith this family had and held onto while their son was fighting for his life. Through every word the father put down in his journal entries, hope, faith and trust in the Lord were evident - in every. single. word.

When Olivia was born, I went through a period of grief, of loss and my faith was heavily tested. My faith was questioned and at that time and in those dark moments, some of it was lost. In one of the journal entries, this father spoke about never knowing why some will have it easy and others will not. I myself pondered this question and it's one that I will never know the answer to. I'll never know why we were chosen this path, why Olivia was born with a life-threatening disease, but long ago, when most of my faith was lost, I picked up what was left of it, put it back together and trusted that questioning the why's and the what if's wasn't the answer, it was playing the cards that we were given, the best we could, while trusting that the Lord had a plan for us and for Olivia. In that time of grief, in that time of doubt, when I began to overcome it, it was then that I knew that with each gift of a new day and with every given tomorrow, my family, needed to live life fully, every. single. day.

The grief, the anger, the frustration, the doubt, it's a never ending battle, one I know that I will fight for the rest of my life. When times are good, the grief and anger is pushed down, away, further inside, but it's still there, always there. When times are bad, like the week long hospital stay in May for Olivia, the grief, the anger, the doubt, the questioning of everything, bubbles over until it overflows and overcomes me. Anxiety, sadness, hurt, anger, despair, helplessness, these are all things I deal with, some more often than others and it's that dealing with it that is my means for coping.

CF is thrown in our faces every single day. There is no behind the scenes. There is no day off. Every day, from the moment I wake up, until the moment I fall asleep, CF is there. We begin each day with Olivia's treatments and finish off each night with the same and then all through the night, Olivia is hooked up to her feeding pump, which often alarms and wakes me multiple times while I'm sleeping, which we run with the hope and the thought that she will gain weight to grow her precious lungs. Every. Single. Day, is a battle against CF.

To say life is unfair, to me often seems like a vast understatement. To say that I wouldn't trade my shoes with someone else, for those not filled with a life threatening disease for my daughther, would be a lie. I'm not saying my bag of stuff is better or worse or more or less significant than anyone elses. I know, I've lived, I've witnessed through the all too often doctor visit's that there are many others who have stuff far worse than I. This local family's bag of stuff, the accident that claimed their son's precious life, my bag doesn't begin to compare. Things could always be worse, this I know and do believe.

I've been down in the trenches, I've been to very dark places, I've questioned all that is and there were days long ago that I wanted to throw in the towel and just be done. Now, before you call in the staff from Shutter Island, hear me out. Life is not fair, this isn't something new, I think everyone knows this. Everyone has something to deal with, everyone has a bag of stuff. Some bags are worse than others, but that's not really the point. I could sit and compare my bag to many people's and I could probably convince most that I know, that my bag is worse. Again, not the point. My point is that no matter how vast our bag of stuff is, how much bad verses good it's filled with, it's how we handle the bag, how we manage it that is my point.

There are days you'll see me and not know that each day I fight like hell for my daughter to beat down the havoc CF wants to do to her on any given day. There are others, where you'd know my bag of stuff has overflowed. I have not, nor will I ever perhaps, master dealing with CF, the chronic illlnes that my daughter lives with, but, each and every day, I have two precious sets of eyes looking up to me, following me for guidance for answers, for truth and knowledge. I have two small beings that I'm in charge of shaping into the adults that they will become. For them and for how precious I know life is, we live. We make the most of our days. I push down those things in my bag that are very significant, albeit things I can't change and work around them. I've said it many times, over and over, but it's true, each day we laugh, some days we cry, but each day we live, and live fully and have fun and hug and love and laugh so that each night, when I lay down, I know that if it's the last day I'm blessed with, we went out with a bang.

Living life fully for us is not making everyday a big hooray. It's the little things, the simple pleasures in life that make life for me what it is. I am beyond thankful that I get to spend so much time, every single day with my kids. Time is precious, there is never enough of it and when it's up, we don't get it back.

This family, on the day of their son's accident, the father wrote about what a really good day that they had together beforehand. What hit home was this father writing about this last day that they would spend with their son outside of the hospital, awake, was a day full of the simple pleasures, the little things in life that make the days special, those that give us joy in living life fully. The father wrote of going out to eat, going to Target to get the makings for carmel apples, those things that we can do together as a family that often trump the big things that we save up our time for. It's not the trips to here and there that the kids remember most, it's the little things, the stories Landen and Olivia will retell about the simple pleasures in life, the everyday things that we find joy, happiness and fun in that the kids often remind me of the most. The days can seem long, mononotous at times, but these days provide us with experiences and everlasting memories that I cherish.

As I continue to follow along with their story, praying that their faith carries them through the life that lies ahead for them as they traverse a path without their son, I'm reminded of how short time is, how precious the little things are. This father wrote about time and encouraged all who read to hug our kids tighter and more often and cherish those things that we don't ever want to forget. So last night, after I laid the kids down to sleep, I wanted to write down those things I love the most, right here, right now, the simple things that mean so much, those things about Landen and Olivia that I never want to forget.

Landen, these are the things I always want to remember about you:
- The smell of your blue blankie that smells just like you, that I snuggle with everynight while you read to me.
- The way you can be so silly that you make me laugh until my sides hurt and tears fill my eyes.
- The part of you that is just like your dad; how your mind figures out the different scenarios for all situations.
- How cute it is when you mess something up and say "Aww Dang!"
- How you get choked up saying goodnight to daddy over the phone when he's away on a business trip, no matter how long or short of a trip it is.
- How sweet and caring you are, your worry and concern for others is beyond your age.
- The way that you always want to help to make life easier for your family, liking asking Santa for a new living room couch.
- The way you care so much for your little sister, which isn't an easy task. With all that she has going on, life can often seem unfair and that you are taking a back burner to her I am sure. Your life although not physically inflicted with cf, is definitely changed and altered because of it and the way that you deal with it, live through it and come out happy, loving and caring, is commendable, at times unbelieveable and I am so proud of you.
- The way you strive for perfection and never want to get anything wrong.
- The way you put in well over 100% into all new tasks you take on.
- How you will let mom and dad beat you in Call of Duty, just to make us feel like winners.
- Reading Diary of a Wimpy Kid books with you at night, especially the night we laughed until we cried about Greg's journal entry about Shel Silverstein.
- Your hugs and your snuggles and the way you curl up right beside me on the couch while we play on the PS3.
- Your dead on reinactment of the kids talking on the not-working-microphones in school lessons.

I love you so much buddy, you are the best son a mom could hope for and I couldn't be any more proud of you.

Ms. Olivia, there are things I will never forget about you, things so engrained in my mind from how your journey began. I'll always remember the struggles you overcame in your first few weeks of life, so many things I'll never forget, so many things I love.
- You are strong and determined, you never let anything or anyone stand in your way from accomplishing that what you want to do.
- I love that dad nicknamed you Deedle from the days you'd stand at the refrigerator, playing with the magnets while I made dinner, saying "deedle, deedle, deedle", over and over and over. I love that even to this day, 7 years later, you are still our little Deedle.
- Your love for all animals, even the rotten, biting cat you have and your forgiving nature - the way that no matter what you never give up hope on your cat, that she'll get better and be nicer.
- Your matter-of-fact attitude topped with just enough sass.
- Your love for life, regardless of the hurdles along the way.
- The kisses I get from you everynight before I tuck you into bed.
- All the hugs you give me, every. single. day.
- Your determination and perserverance and carefree attitude in all things you do.
- Your care and concern for your family.
- Your outlook on cystic fibrosis.
- Your laugh, I need to get it on video tape.
- I love to see and hear you sing.
- The way you tell it like it is.
- The strength that you have through all the pokes and prods and medical things you have to endure all too often.
- Your fearlessness, i.e. dirtbiking.

I love you so much, you are my baby girl and my hero and I'm so proud of you and lucky to call you my own.

I feel so blessed to have Landen and Olivia as my son and daughter. They are as different as night and day at times and at others so much of the same. They make our lives complete and fulfilled. They are the icing on our cake. These two make life what it is, we have fun and cherish all things and each other and they remind me that no matter how big my bag of stuff is, in times of overflowing or not, that together we can carry it.

And on that note, this week Jeff and I celebrated our 11 year anniversary. To him: Happy Anniversary and cheers to many, many more. He and I have a relationship where we compliment each other and yet can be as different as night and day and all too much of the same as well. We travel this path together and remain a united force and even though we may not see eye to eye on some things, many things, and neither of us will admit to being wrong, we really are two peas in a pod.