I am going to start by saying I am so thankful for so much this year. I am thankful for family and friends, and the complete support they provide us. I am thankful for my hubby and son, without them I am sure I would stumble. I give credit to those single parents dealing with sickness. I am thankful that my hubby has a good job, because even with health benefits our average medical costs run close to 5 digits out of pocket. I am so very thankful that I live in Canada, because they consider cystic fibrosis a life shorting disease so some of the really expensive drugs are covered. If it wasn't for this, we would be renting a little apartment just to make things meet. We are truly blessed! I am so thankful for my parents,who live on the same property. If it wasn't for them when I was in hospital for myself or for Annika , I would be a mess worrying about Parker. It is so helpful having them with us for this journey. David can go to work knowing his children and wife are cared for. It takes a village to raise a family with cystic fibrosis.
This year has been a little crazy, but I wouldn't change a thing. I have learned many lessons. I have met new friends, and rekindled some lost friendships. I have spent 124 days hooked up to an IV this year. My arse has been in bed healing for almost double that. I have lost 40 lbs, but gained so much insight about life. We are nowhere near rich, we actually borderline below middle class after medical expenses, but let me tell you WE ARE RICH in love, faith and life! We scrimp and save every penny we have that doesn't go to bill to go on a family vacation every two years.We earn each and every adventure.We want to see the world. We live life to the fullest, not worrying about the future. We live in the NOW!
Annika was decorating her little Christmas tree in her room. This year she decided to string her Bravery beads that she has collected over the last 4 years. A bravery bead is earned when a child undergoes different procedures in hospital. I was dumb founded by the total. I cried privately for her, even though she NEVER cries for herself. As a parent you want your child never to feel pain, you want to be their hero. Well, she is my HERO.
Here are the totals that sum things up for her journey with cystic fibrosis in JUST the last FOUR years:
485 days (69 weeks) in hospital admission, 16 cystic fibrosis clinics,17 specialists visits,117 dressing /bandage changes, 1,932 infusions of IV antibiotics , 5 line placement or removals (port or picc lines) 8 surgical procedures, 236 pokes(iv starts, blood,etc) that's an average of 59 needles a year! 12 chest x-rays, 3 ct scans, 2 MRI , 13 g-tube replacements (changing MIKEY out) , 892 hours of physical therapy, 2,920 nebulizers (breathing treatments), 336 days on oral antibiotics. Whew!
Have I blown your mind yet? She never complains, and I have only seen her breakdown three times in those last four years. She is an absolutely amazing kid. The nurses always chuckle when she says thank you after they just stabbed her with a needle. Thank you......lol. She takes on average 6,205 enzymes a year to digest her food, because her pancreas doesn't work so she can't digest fats. Her other oral meds, not including the oral antibiotics total to 988 pills a year. A whopping grand total of 7,198 pills she swallows on average a year. In our last four years it totals 28,792 pills.
So when you look at our beautiful child, and think she looks great.....you would never know she was sick.....WELL CHECK YOURSELF, perfection takes a lot of work....lol!
I am thankful to have her and my son. My handsome young man who is trying to find his way into the world. Discovering what pre-adulthood is like. His journey in this has been a roller coaster of ups and downs. David and I always worry about him. Anyone who has a sick child, and then throw in a sick mother.....you worry about them being left out. You worry about them being jealous of the other child. You worry about resentment, and you worry about depression. What our family goes through with this disease, is unlike most families journey.We are not the "norm".
Parker is a sensitive, caring young man. He wears his heart on his sleeve. His emotions are very readable, and for this I am thankful. I am so thankful that both my children feel comfortable coming to me with their concerns. Parker has no mental health issues, but he sees a counsellor twice a month. We made the decision to do this so he could express his fears and frustrations without feeling like our feelings would be hurt. He is a typical 12 year old boy who is going through puberty.....a trip within itself. He hates school, but loves learning( I know, it makes no sense!) He is a walking encyclopedia on guns, fish, food and history. He hasn't decided if he wants to be a gunsmith for the police force or a chef. We told him he has lots of time to figure that out. He has yet to experience his first kiss, and he thinks Tobuscus rocks. He loves music and movies, and is the biggest goofball out there. He can always make us laugh. Parker is learning how to push buttons, much to his avail. He has discovered that his mom is a force not to be recounded with.....lol, but I know this is all a part of growing up. Overall he is a caring , loving son and brother.
I have lots to be thankful for, thanks to my Lord. I have witnessed several miracles, and felt the prayers of many people. It still amazes me, the kindness from people. It can make you humble. So here I sit at 12 am in the morning, thinking of all the things I need to do for our trip next week. Pay the house sitter, make sure I pack the right clothes, medications, equipment. Pay the bills for the year, do the paperwork for funding, clean the house, etc...etc....etc. All I can think is THANK YOU LORD for our life, as crazy and tough as it is, I am still so thankful for every breath, every ache, every tear. I am thankful for life.
Can I get an AMEN?
So this is the life of a CF family in a glimpse. I am not posting it for sympathy....anyone who knows me, knows I am one tough cookie and I don't like to dwell on the crap. I post this because one simple glimpse of a innocent little girls handmade garland brought back so many memories of our journey to date. I then realized I haven't posted on this blog for almost 2 years. Gee i wonder why?
I forgot how therapeutic the writing is, I forgot how after typing my worries and my fears subside. It is digital therapy.
I will warn you at times there will be swearing, and hurt feelings. At times there will be laughter. At times there will be pain. So in the future I promise to post here more often for my friends and family.
Thank you so much everyone, for the support this year. We are looking forward to our vacation, and the holidays. Most of all we are looking forward to 2015!