Day 259 | MAY 27, 2022
Good evening, Friends, today is day 259 of our new and amazing life!
Today we started our day by having breakfast as a family:) Charlie asked for the same protein waffles as they boys eat, and since I needed to make a huge trip to the grocery store, we only had watermelon as a fruit choice today 🙂, luckily for me, Charlie loves watermelon!
It was very surreal to wake up and walk downstairs and see Charlie’s room, it feels almost like a dream.
Today was the picnic that Charlie really wanted to attend as part of London’s end of school year, and she was so happy to get out there and attend the picnic, this was the first time Charlie went out in public besides her incredible welcome reception.
It went better than we expected, of course a few of the children approached Charlie and asked questions 🙂 but nothing that Charlie couldn’t answer with her incredible grace and sense of humor.
Everyone was incredibly nice with her, and we greatly appreciate the few parents that stop by to say hello, thank you.
It is hard to imagine how happy Charlie feels to be back at home and to be part of her boy's life once again.
After the Picnic I went down to my office and tried to do some work done, but all I did was work on things for Charlie, like her meds, ordering medical supplies that were missing from her list, talking with so many people, making appointments, her schedule is becoming full very fast, between medical appointments, therapy, and personal affairs.
We are still in disbelief that she is home!
Now to the real and deep thoughts of this second day at home, it is hard! Actually, harder than I anticipated.
Charlie and I had talked months ago, how the coming home phase would be the hardest so far, and we nailed it. The frustration and the overwhelming feelings are real, and we are doing our best to adjust and learn this new reality at our own home.
Please know, that we are beyond grateful for her return home, and also grateful for the home care that Charlie is receiving, but even the help takes adjustment, it is not easy to have someone with you 24/7, it takes time to adjust, the complex nature of her care and medication schedule is overwhelming for any lay person, I am grateful for the 3RNs that we have hired, they are a wealth of knowledge and a huge help! Without the professional guidance, I can accidentally kill Charlie with her meds, and God knows that can’t happen!
I feel like running in many directions all at once , everyone needs me for something, and yes, there are moments that I just want to be alone, and luckily for me, the alone time only comes when I am writing my journal, and at this moment I can finally hear my own thoughts and boy, there are some good and some bad ones there, but i quickly remind myself of the miracle that we have received, and no matter how hard it is, nothing compares to what Charlie has to endure each and every single day, and that thought keeps me going.
Charlie is doing an amazing job interacting with the boys, London is a sweet boy and he loves his mommy so much!
Julien is the cutest and he knows it! He is so full of life, always looking for his next trouble, and Charlie is loving every second with him, it is absolutely amazing to witness her love for her boys!
Today we have a very kind friend stopping by to see Charlie, and end up helping her with some organizing around her room and the main floor.
I am starting to feel that my body wants to feel tired, but my mind is refusing to agree with it, so for now I am continuing my several duties with pleasure.
This weekend I am hoping to write the second half of our book. Now is the good part, my incredible arguments with the Doctors and my advocacy in action. Just remarkable that I had to overcome in terms of patient advocacy, I am really enjoying the writing about this topic, that is a goal for this weekend.
Now, as I fall asleep, I just remember that I have to go and buy groceries, I just want to say thank you!
We continue to ask for your prayers, especially for our mental strength. We have this incredible battle ahead of us, and the fight just started and boy it is a hard one.
Thank you for your prayers and support!
May God Bless You!
André
