Fink Of Us: Celebrating the little things

Here we are 19 months into the hardest, depressing, joyful, and educational 19 months I've lived so far.

That was the sentence I saved from 3 years ago. It's so amazing Declan is turning 5 in less than a month! We can't help but to do a little dance and say HA! to all those doctors that said to prepare our selves. Like there was some sort of handbook for parents. "Best way to grieve..." (face palm). I don't think one can actually prepare one self to say goodbye to their child. We never should out live our children, but it happens all the time. Mom's and Dad's try to hold onto their children, their souls, and I think our souls actually cracks when we say goodbye. So many things run through my head late at night. How will I grieve? How will I love again? How will I still hold onto my other children? How will my marriage survive? Five years of me, fearing every cough, every hospital stay, every doctor's visit with more bad news. But I will take the fear over the loss. Because even though I fear daily for Declan, I can fight! I would like to think in the flight or fight scenario I would fight till the death. I'm just praying that Declan can tell me when he is done fighting so I never have to make that decision. Until then I will fight, my husband will fight, our children will fight for their brother. He isn't going anywhere.
Life is hard! It's depressing, and exhausting. Parents try and try to make our children better than ourselves, while still adulting. The world is turning to shit and we are just trying to hold on to our little family, hoping that nothing will change. It can consume you. The hate especially, it's like a virus that spreads. Now everything is online and it spreads faster. Some change is good, some not. I'm not getting into the world today, it would fill a book and who wants to read that!
The title to this post is called celebrate the little things. How do you celebrate the little things with your children? Each child has something different to celebrate. An "A" in science, yellow belt in karate, hearing your toddler say mom for the first time. I had to wait four years to hear Declan say "mom", and it is still the sweetest sound. I try really hard to celebrate the small things with D&K, to make sure they know I love them. It is easy to get over shadowed with all of Declan's problems. So some days the only thing that I am able to say to them are "I love you". Everyday, day or night, I hope it's a habit we never get out of. With Declan most things seem little, but are big for us. Drinking out of a straw, and now he has moved onto drinking out of a cup, you have no idea how much work went into that for Declan. Navigating through a store without hitting one thing... or person.... seems small, but it was a big deal for us. How healthy he has been. We celebrate what we can, and never give up.
It feels like I'm painting this perfect picture of our family, and trust me when I say we are not. We fight, we argue, we are lazy. We have stepped it up for Declan, but he is actually easy to take care of. Just different. When I lay Declan down for a nap, he can't crawl out of bed time and time again. Declan doesn't want to eat dinner? Okay that is fine, I just put it in his G tube. He still has his four year old qualities, tantrums and all, it's just different. We are not perfect, I'm not perfect. We just don't quit.

Sorry this is short I'm trying to get back into the habit of blogging. Pictures below: