Into the battlefield

 This weekend has been a different one for sure. Full of extreme highs and extreme lows. Parker had a great weekend , full of firsts. Annika has had a horrible weekend full of pain. David has been preparing to go back to work tomorrow. I have tried to keep busy and distracted. Between getting things ready for my girl guide unit, caring for Annika, cancelling a planned camping trip, rejoicing with my son and trying to keep up with regular responsibilities. I have tried to forget how truly painful this weekend has been for me. I didnt remind my family that this weekend marked two years since I lost my father. October 2, 2018 at 11:50pm my father took his last breath, and I wasn't able to be by his side when he passed. I was laying in a hospital being prepared for a bowel resection. I never got to say goodbye. Shortly after his passing I was discharged to come home and heal. My son misses his night time stories of police and military. My daughter misses his whistling, kisses and egg sandwiches. I miss everything about him. My mom was starting to become positive, and looking forward to traveling with her best friend. Sadly that never happened. Within 5 months of my dad's death my mom's best friend was dead from cancer. The one thing my mom and her best friend shared was a cancer diagnosis. In February of 2019 my mom was diagnosed with leukemia.Now I had to focus on her battle, and put my mourning aside. I had to stay focused and positive. I had to put everyone else before my needs. Why ? Because that is what a daughter, mother and wife does when there family needs her. She exists for them.

I struggled with my health. I watched my daughter struggle with her health, and I watched my mother slowly deteriorate. 

Then came this cursed COVID-19 virus. A virus that I have lost friends too. A virus that has stole so much from so many people. A virus that forced everyone into isolation and changed the way people interacted with everyone. During this virus I watched my mother take her last breath on March 27 , 2020 at 4:55 am in the morning. I was honoured to hold her hand while she did it. Her son and I were by her side . It was the most beautiful thing, yet the most horrific thing I have ever witnessed. My best friend was gone....and now more than ever I feel her loss because I no longer have a cheerleader in the sidelines to remind me that everything was going to be ok. My mother would always remind me that this too will pass. I have suffered so much loss in such a short time , and still have not allowed myself to grieve. And today my daughter faces another admission of isolation with only me by her side . No visitors, only me because of Covid-19. I face taking my daughter into the battlefield, only to be possibly exposed to God knows what because her pain is worsening. Her pain is my pain. I do not have the support of my father calling me trying to cheer me up. I do not have my mother giving me the biggest bear hug. My biggest supporters are gone. I miss them desperately. I sit in this ER room, remembering being here last in March 2020. When I had to make medical decisions for my mother. I am reminded of her passing with every second here. 

A Supernatural Gift

 Sometimes a passion or a gift is lost in everyday life. The realities of our world changes our paths on so many levels. Family responsibilities , health crisis and additional pressures on my timetable caused me to put aside the best therapy I ever had. WRITING! 

Why did I allow the one thing that helped make the world make sense , cease and desist? Why did I let the one passion in my life go to the wayside?

While talking to a dear friend on the phone today, life hit me in the side of my head with a brick. Now granted that brick was not made of stone...but the impact was just as hurtful. I realized that while offering this friend advice on pushing through the negatives of the world, I have not been living my true words. I used to pour every feeling and thought into this blog, never knowing where my words would lead me. 

During that beloved conversation, I was reminded of this blog and the joy it gave me. I was trying to lift her up and remind her that she was valuable, that she mattered. I wanted her to know that she was making a difference. I told her that fate brought us together. Everything that happens in life, happens by devine intervention. During this conversation she called me supernatural, that a friendship like mine is from another world. It’s funny how two people from two different worlds, from two countries over 8000 km apart can feel so connected. That two strangers , over time have created a bond like family. Soul sisters

Little did this friend understand that with this simple conversation , I was reminded of a love that I let slip through my fingers. A love of words.

So I dedicate this post to my soul sister, Georgiana. Thank you for reminding me that words can change a person’s world. Words can make a difference.

Today starts a new beginning .Today I was reminded that sometimes you need to look to your past, in order to move towards your future. 

Thank you my friend,

I love you.

A Year in a Glance.....and what a year it was!

    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!

God Bless,

Kimberly

New port, new concerns

Annika was admitted on the 24th, and had her IV port put in. She woke from the surgery in a lot of pain. We had to give her morphine to get it under control. Once she slept, and we kept topping her up on tylenol and advil, we managed to keep the pain under control. While we where in London, we got a lot of answers. We found up what was holding up funding for G-tube and supplies. We learned how to do PEP more efficiently, we changed enzymes, and tried some new supplements. We also did a kidney function test, and got our results for our sputum turned in a week ago. Annika is culturing  pseudomonas. This is not a good thing to culture with CF. We are aggressively treating it with antibiotics , both orally and inhaled. It is possible that we may have to do IV as well. This bug would totally explain why her cough has repetitively been returning. She is not contagious to anyone, except those with cf......which is me. My doctor is going to monitor me closely also. Everyone always wonders why having 2 people in the same house with this disease is such a big deal. Well cf people are very giving to each other, we like to share germs. This will not stop me from being the mother I have always been. I will continue to hug her and love her, and care for her. But like in the past we will have to be careful not to share utensils, glasses, etc. I will not let this disease take away love from my daughter! EVER. It is an issue we will have to live with. We will always share bugs, because when Annika is sick, she wants her mom. I will not deny that. I will not take that from her, being infected is a chance I will take for my daughter.
Now that we are home our physio has been bumped up to 2-3 half hour treatments, 2 inhaled Tobi treatments, extra Ventolin, and hyper tonic saline treatments. She has to take it easy for 2 weeks in physical activity to prevent the port for being jarred. David and I will do our best to kept treatment on a schedule. All the while letting her be a normal kid. I have had people ask me, why don't you work. Lets see between both Annika's and my cf, and hospital admissions, and physio, clinics, and oh yeah my other child and husband......I can barely function now, and a job on top of that? Really? I stopped attending births, which I miss desperately, but realize it is just not possible. I truly need to focus on my family and health. It does break my heart to be out of the birth scene though.
Some days it feels like our whole life revolves around cystic fibrosis. So much has been effected by it. Family, friends, marriage, health.......time? Some days I just want to throw the towel in, but than that little chipmunk laugh gives me what I need to get pissed at this disease and fight it tooth and nail till the end. This weekend is going to be a long one for sure. I have a head cold, along with my hubby. Parker is going away to Cub camp, and Annika is recovering. Hopefully her fever goes away, and her cough dies down for Monday and school or I fear she will be admitted for IV drugs. Time will tell. I promise to keep you posted on changes. Much love from a cf mom still hanging out in her pj's at 2:30 in the afternoon!

Admission to London's Children Hospital

Next weekend will be insane. Friday is the first PA day of the year, and that being said it will be the official start of the weekend. Saturday , Annika has dance in the morning and then we will be joining my brother and sister in law for apple picking at Wagner's. Sunday we will start our week by supporting my cousin and his fiance at The Kidney Foundation , to walk in support for his soon to be step daughter Breanna. She is a young lady who is on the transplant list. Too young to have to deal with transplant already. Sunday night we have our little niece Joelle's fourth birthday. Boy did those 4 years go by really fast. CRAZY! Sunday night, my sister in law is joining me for a long ride to London with Annika to the Children's Hospital. We will stay in Ronald MacDonald House on Sunday night. Monday morning the madness starts.Annika will be admitted for a study on her kidneys . She will have to do nuclear medicine, IVs and some new meds. While we are there over the next few days we will be trying new supplements, enzymes, and will be having a IV port surgically placed. Not sure what we are going to do about this cough she has right now, I am sure they will be giving her some meds via IV while we are there. We will see.
I have struggled with this placement of her IV port. She had one placed 5 years ago, and it lasted over 2 years before she developed a blood infection and it had to be removed. Her last admission we had to stay in hospital for IV meds because after 4 attempts, all picc line insertions failed, her veins collapsed, and would not allow placement. So my biggest fear is another blood infection. When you have a picc line or IV and it gets infected, you pull it and voila, the infection clears up. With an IV port, the port has to be surgically removed.This is my biggest fear. Annika has had thrombosis with her last picc line, and she had a blood infection also. She got really sick. It was a really scary time for us. This is my biggest fear with this IV port. I know I have to put this in God's hands, but nevertheless, I am nervous.
Every month with an IV port, a CCAC nurse will have to come in to our home to do a Heparin flush of the port to keep it functional. My child will be poked at least once a month while she has this, and like a child with diabetes, she will become accustom to it, just like physio and breathing treatments are second nature to her. It still frustrates the hell out of me. It still makes me angry. It still makes me envious of all the parents I know who can just make plans with no thought of medications,and treatments. It is not fair for Annika. It is not fair for Parker. Her bother who has to grow up seeing his sister or mom sick all the time. IT IS NOT FAIR! It is not fair to David, some days he has to be father, mother, friend, and healer! IT IS NOT FAIR!. It is not fair that I can't be the friend I should be. I can't be the wife or mother I should be! I can't be the daughter or sister I should be! It is not fair that Annika might potentially have to feel these frustrations herself in the future! I hate the thought of another admission. I hate the idea of my future cf clinic and surgeon consult in October. You  know I just want to be a normal, boring, everyday housewife and mom! I want my biggest concern to be what I am going to make for dinner, and helping my kids ride a bike. I want to hang out with my friends and help them when they need it. I don't want to be in a one sided friendship.....them giving and me taking, taking taking. This is not the life I envisioned when I said I Do. This was not what I dreamed of growing up. I am freaking 40, and frustrated as all hell. I want my son to love school. I want my daughter to never experience another hospital stay, I want my body to cooperate! GRRRRRRRRRRRRRR! I want so much that just comes natural to others. I see people not take care of their bodies by smoking, and drinking, drugs or poor diet. I see them laugh off what they can do tomorrow. I see parents not hug their children, or play with them. I see strangers caring for their children, just so they can still have their social life( we aren't talking about date night, or weekends away) You know the type I am talking about. I personally know people who don't tuck their kids in at night, and scream at them for missing a goal. REALLY? All I want is my kids to get a good education, fall in love, choose a career they LOVE, and maybe if I am really lucky, a grand kid or two. I would love nothing more than to see my daughter marry( if she chooses) and have a child ( if she chooses) Every dance recital I watch , I cry tears of joy, when there are so many parents that just flippantly say " I will catch the next one!" So UNFAIR! I know this isn't a punishment, I don't believe that stupid saying God Only Gives You What You Can Handle! Bull crap! God doesn't punish his children with pain, suffering, and sickness. This isn't God giving me what I can handle! What God does do , He provides me with the ability to handle what is given to me, he doesn't GIVE me the sorrow. He surrounds me with family, and friends ( that at times I am sure I don't deserve) He surrounds me with those who believe. He blesses me with wonderful, loving children. He has given us gifts to deal with this disease. He has given us love. He has given me modern technology, so that I may vent my frustrations to the cyber world. So that I may write and release. Digital therapy  . I know that he has a plan for us all. I know I have NO say in that plan. I know it doesn't help to feel jealousy, anger, or dismay. I know all these things as his child are wrong, yet I still experience these feelings this week more than ever.