Wednesday, January 16, 2019

Children during illness

 Summer's 3rd birthday, Daddy felt well enough to go to Build a Bear and to Coney for lunch. 
Lily bought Daddy an Elmo shirt for Easter. 

Daddy's helpers
Family photo by Summer
Tubes and bags everywhere and still playing with his girls
Lily's 3rd birthday and one of the last photos of him with the girls

Whenever people would ask about the situation I would always respond, "It could be worse, the girls could understand." I always told everyone if he had to die I would rather it have happened the way it did, when they didn't really understand. They also were losing out on growing up with a great parent. That was so hard for me to accept then and even now. One of the first thoughts I had when we were told the news was, who is going to walk them down the aisle? I know, probably stupid and the last thing I should have been worried about, but still till this day I struggle going to weddings because of this. When I met Ray he couldn't wait to have kids and was always so good with them. I knew teaching was his thing because of how much he loved to be around and influence children. He was an awesome Dad. He took the girls everywhere with him and they meant the world to him.

On Summer's first doctor's visit as a newborn I didn't feel well enough to leave the house so he took her, a few days old, all by himself. He then followed that up by a trip to the dance studio and my parent's house. He was the one that took Summer to get her ear's pierced when she had them done. He absolutely loved being a father and wasn't afraid to do anything with them.

When Ray was first diagnosed the girls went to stay with my parents. My Dad had recently retired and my Mom was able to take a leave. It was so hard leaving them there though. At 1 and 2 I felt like they needed to be home with me. They didn't understand what was going on and were used to being with me.

As time went on and we learned our new normal at home I would bring them home to stay. Ray had a hard time with the noise though and I honestly think it was hard for him to be around them knowing what his outcome would be. He never said it but I could just tell. The Dad that once did everything with his daughters couldn't even hold them anymore because of all the tubes he had. I do have a few pictures of him with the girls playing on the floor when he did have a bit of energy, which wasn't often.

The girls were his little "nurses". They liked to help him in any way they could. They knew Daddy was sick, but sometimes medicine didn't make you better. I was trying to prepare them for the inevitable, but also didn't want them to be scared to be sick or for someone else to be.

During this time germs were a HUGE concern for me. If they brought home germs it could potentially make him very sick and kill him. Other people don't understand this so going to library classes or gymnastics, etc. there were almost always sick kids. I had to bring the girls home from wherever we were and always strip them down, put clothes straight in the wash, and give them baths.

I tried to keep things as normal for the girls as possible. I kept taking Summer to dance class, both of them to library classes, and Lily to gymnastics. They were also what kept me going at this time too.

Following up on my guilt post from last week I felt a ton of guilt with this too. I wanted to be with the girls, but I also knew Ray needed me too. It was a constant struggle with how to balance the time. I also felt this is the prime age for kids to be taught basic things (numbers, letters, cleanup, etc) and it wasn't being done. Everyone was focused on just keeping them happy and entertained.

When Ray entered into hospice care the nurse brought materials for the girls. Luckily, since I have a counseling background I was able to put into use what I had learned. I wanted the transition to be as easy as possible for them. I wanted life to be the same for them...minus Dad. I wanted them to know that they always have a Dad and I try to keep his memory alive every day with them. I talk about him all the time and tell them stories because I know if I don't they were too young and will forget. I show them pictures, I just want them to know how much he loved them.

He did write them a letter, with my encouragement, but since he felt doing anything like that admitted he was giving up he never wanted to. I really wish he would have personalized the letters a bit more to them, but at least I do have something to give them when they get older.

This post was probably the hardest post for me to write of all my posts because just thinking of what he is missing out on and the girls is so hard.

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