Hello, son,
Yesterday, the start of the day went well. It was your first day without your feeding tube. There was no problem feeding you. You love to eat, and that’s fantastic!
Then, we tried to give you water. And that’s when it became much more complicated.
As soon as a medication or any liquid substance, you refuse it.
The accessories we bought to try and give it to you don’t work either.
Your stools show a possible risk of dehydration, and that worries us tremendously.
We spent the day trying, following the specialists’ advice. But each time it’s difficult because you refuse, which makes the tension rise throughout the day.
Last night, we were exhausted. Anxious. Depressed. We wanted to give you water, but we couldn’t. You were crying. Fortunately, the person who helped us yesterday was there. The one who was supposed to come didn’t show up. This new person helped us get through this difficult moment. What was supposed to be a puree turned into a more or less liquid soup, and miraculously! we succeeded! Then you choked on your medication and coughed for 20 minutes, even though I still had 4 aerosols to administer…
It’s a good thing the person helping us was there because your mom and I were completely demoralized.
Anyway, the night passed, and at 4 AM, we started again.
Good news, you peed properly twice.
That makes us think it seems to be working. But the struggle continues..
Change of subject
When I was little, Grandma and Grandpa and I always decorated the Christmas tree together.
This year, I told myself it was important to do it together.
So I bought a tiny Christmas tree because we’re a bit short on space here.
And then we did it right before your eyes. You were watching us. We laughed a lot because the tree fell three times due to the wind, with all the decorations rolling on the floor.
Actually, I think we’re going to have the best Christmas of our lives. Do you know why?
Because we survived, and now we know the true value of life. (even if Grandma already knows it too well).
I also wanted to surprise Grandma and Grandpa by taking a few photos without gowns or masks.
So we asked them to take a shower, change clothes, and sanitize everything, and in five minutes flat, we took a few photos.
Just to have a memory of this day when we decorated your first Christmas tree with Grandpa and Grandma!
We’ll surely do more on Christmas Day, but this one was a little surprise for them. I know they are sad too. Sad to be far away. And I want them to keep a good memory of the time they spend with you.
What we’re going through is really not easy.
Every day I try to tell myself that when we get through this, we’ll be stronger.
When you read this text, you’ll probably be 18 years old.
I hope with all my heart that you’ll be in great shape and that you’ll live life to the fullest.
And that you’ll look at the photos of your first Christmas tree and say, “they were crazy”.
I love you
Dad
