Trikafta-60 Days In

So it’s been a really busy week. A week I would not have been able to endure pre-Trikafta. My brother and I have been planning my mom and dad’s 50th anniversary for a few months now. Because of Covid our plans of traveling to San Antonio as a family were rejected. We decided to keep it small and have a catered 3 course meal in their home. We reached out to a friend who is a private chef and had him build the menu based on our likes. I’ll post a pic of the menu shortly. Now we also thought about inviting the maid of honour, my mom’s sister, Alex and my dad’s best man, his sister’s husband, Maurice as a complete surprise. Thankfully both couples were available and on board with our plan. We had 6 weeks to keep this a secret, which normally in my family would be very difficult. hahahaha

So my week started with spit shining the house as both couples would be staying with me. That is a huge job as my house is much too big for me. That being said, I kicked some major ass with my new and improved lungs. Another first in a long while. Wednesday my aunt and uncle arrive from Prince George and we concocted a plan to surprise mom first with her maid of honour/sister. Alex. Aunty Alex and Uncle Bob went to edible arrangements to order 50 chocolate covered strawberries and had the store call my parents place to let them know that an arrangement was on the way. I was at their house when the call came. My dad just simply stated, “oh it’s from your sister “. Only because that is what she has done for their past anniversaries. Nothing out of the ordinary.

Upon the doorbell ringing, dad heads to open the door and Alex, who has a toque and a mask on, hands the arrangement to my dad and then asks for a tip. Dad, being dad, said “tip?, why would I tip on a gift?” And went to close the door, when Alex finally revealed herself. And then the chaos began. Mom comes down the hallway in utter shock, yelling and crying instantly that she can’t believe her sister is here! It’s been 3+ years since they’ve seen each other due to Covid. So there were hugs and tears and pure joy. It was an amazing moment to have executed and witnessed. After all the feels we sat down to catch our breath. It was a great surprise. At this time mom asks if Uncle Maurice and Aunty Carol were coming and I quickly lied and said no because it was Uncle Maurice’s 75th birthday the next day and my cousins were having a party for him.

Next day is the big day and I am in charge of getting my aunt Carol and uncle Maurice from the airport. While I am going up there, mom is asking if she can come over and get a card table and some chairs. I told her I’m out at the vet picking up some drugs for my dog, California. Told her to go ahead and grab them while I was gone. So once I gathered my aunt and uncle we head home to quickly change and get over to the party. I am going to leave the reveal to you to watch in this video. It was epic!

So we had an unbelievable meal and visited and laughed and toasted my parents who have endured 5 decades of marriage, lots of ups and lots of downs but together as a united front. They were so young when they married and then I came along and added much challenge to their lives. Long story short, they did an amazing job, staying in love, navigating my health struggles and raising 2 great kids. They were so happy to see me celebrate this milestone with renewed health. Something they haven’t seen in quite some time. It was the perfect night.

Neil and I left early so the 6 of them could all catch up. I had such a great visit with them and it felt good seeing family after such a long time away. I am grateful for FaceTime but nothing beats face to face.

Now as you can imagine, this was a lot of work and you are correct. I wouldn’t have been able to do any of it without my miracle drug. It felt good. Normally when there is this much activity I get sick fast and need 2 or 3 days of rest, extra meds and extra feeds. I bounced back every morning. It was incredible to just keep going. I so appreciate these little things, each and everyday. To end the week I have enjoyed 52 hours now WITHOUT oxygen. Yes! I cut the leash and I am ecstatic. I’ve been up and down the stairs with ease. Something I have not been able to do for 7 years at least. I have had oxygen on every night of my life for 7 years or 2500 days. Well the last 2 nights I have frolicked in my sleep not tethered to the leash. Nothing tangling me up or choking me. It’s been a vacation from my life truly! Everything I knew as a chronically ill person has vanished. I have been feeling better and better each day it seems. Something I couldn’t do, I can now do, whether it be vacuum, climb the stairs or trudge through the snow with relative ease. In my life, the little things have always been the big things but this new life of mine is just highlighting those little things she I can appreciate them even more.

I am looking forward to Christmas and then camping season. Need to take these new lungs out for a big adventure. So whatever you do right now, stop and look around and just take it all in. Be grateful for the little stuff because it’s all that matters, especially in the current state of this planet. Love and be loved. Until next week, I bid you a calm and peaceful holiday.

One Comment

  1. Pohl

    What a great surprise you and Neil planned for your folks.  You could
    not have done anything better. It is so good to hear how well you are
    feeling.  I look forward to participating in your big celebration next
    year!!  I was not able to view your video!  Can you send it directly to
    me?  Donna told me how emotional your Dad was when he saw Maurice.  I
    have somehow lost you on facebook but I do get your Lungs of Anarchy
    blog.  I just finished 4 days of working on a grant application for
    $20,900 for my Lawn Bowling Club.  Thank goodness I had help today to
    get the final application finished.  Take care of yourself and have a
    very Merry Christmas and give you family a big hus from me.  Christmas
    Gifts will have to wait until next summer.  I had no time or inclination
    to shop.  Three calendars and some peanut butter fudge are what Jack and
    family are getting!!

    Like

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