The Saga Continues...

I think last week's post was a little traumatic for me to relive. My hope is that I can continue to heal through these blogs, without all the effects of reliving the emotions.

I left off with the story of our first encounter with diabetic retinopothy. To save some time, I will fast forward through the 4 years of trauma. From that appointment at Kaiser at 10pm, Doug endured 4 years of surgeries, laser treatments, daily (or every other day) pressure checks, etc. It seems like everything that could go wrong with each surgery did go wrong. It got to the point that I would ask Doug's retinal surgeon to give me "worst case scenario" with each surgery because there was a good bet that if something was going to go wrong, it did!

After a couple of his surgeries to stop the bleeding, he developed further complications which caused a build up of pressure. His other surgeries caused cataracts to develop which resulted in subsequent surgeries to remove the cataracts. In between surgeries he had more laser treatments which were done in an attempt to bypass surgery- which resulted in a surgery anyway. It was a never ending battle.

Of course every time Doug had to have surgery the usual stress and anxiety was felt, but its the domino effect to the rest of our life that I had not expected. All of the trauma with Doug's eyes carried over into every aspect of our lives. At work we were in the process of renewing our contract with another agency. Things were hectic and I was training the staff at our partner agencies which meant I could not take time off work. Besides that my boss wasn't very sympathetic to my family needs so I didn't share very much about was going on- besides I didn't really want my personal business all over the office. Subsequently we tried scheduling all of Doug's surgeries as early as possible in the morning so that I didn't have to miss much work. Trying to arrange all of this, get Doug to the hospital for surgery at 3, 4 and 5am was difficult. Then I had to go to work as soon as he was out of surgery. Leaving him at home was difficult, but my parents were extremely generous with their time and did everything they could to help us.

Then there was Matthew. He was so young and didn't really understand what was happening. In all fairness- neither did I! It was difficult trying to help Matthew understand why Daddy was having surgery all the time, why he had to stay in the hospital, and why when he came home he had to stay in bed with his face laying flat. Matthew wasn't understanding why Daddy couldn't take him to school, get him up in the morning, take him to breakfast once in a while and do all the things Daddy had been doing. Furthermore, Matthew didn't understand why Daddy couldn't play with him. I did my best to run the household and take care of Doug, but our lives were spiraling and I felt like I was at the bottom of the funnel cloud.

With each surgery was more and more loss of vision. I sat through follow up appointments and post op appointments while they had Doug read the vision chart. I watched him at home as he was loosing sight of more and more things in his environment. He was running into cupboard doors, falling on the steps of the porch, missing the car door handle when he was trying to get into the car, etc etc. The hardest part I think was watching him chase food around his plate at mealtime. Its like he was loosing his ability to function independently--and there was nothing I could to stop it. He literally went from bad to worse right before my eyes.

Through all of this Doug was fired from his job. This happened just a few months before our wedding. I can honestly say I never saw him so distraught. To this day, nothing has topped those feelings. With all of this Doug was slipping into a depression, and I was trying to stay about water (yet slowly sinking). I felt like we didn't have the support of anyone- at least anyone that understood. Nobody came to us to see if they could help. Nobody called to offer to pitch in. The only 2 people that were there unconditionally was my parents. My dad came over to mow our lawn. My mom stayed with Doug whenever we asked. She also sat with us at the hospital and tried to support me. She watched Matthew for us when I had to have Doug at the hospital really early in the morning. As much as they did for us, I needed more. I needed someone to talk to. I needed help processing all of this. I needed help financially. We were now living on just my income and that wasn't nearly enough. We were constantly running out of food. I was always on the phone asking the landlord for an extension on the rent. I rarely had enough gas money to get to work and see clients. The worst part was the immense loneliness I felt. I still don't know how I functioned every single day. I think the trauma we went through is why every time I hear that something bad happens to my friends, I feel this immense need to help. I had never felt so alone and I can't imagine anyone else feeling that lonely.

Once Doug's eyes stabilized (something I never thought would happen- nor do I believe it is happening now) we were connected to the Blind Center in Stockton. They are the most amazing people I have ever met. Joanie came to our house to teach Doug how to function safely in his environment. She taught him how to use a cane for the blind, how to cook, how to take care of some of his personal needs (the ones I would allow her to help with, lol), and how to use public transportation. Before I go any further, let me take a moment to publicly apologize to her for my behavior...

I was not nice to Joanie. I am embarrassed to admit that, but I was actually mean to her in the beginning. I was angry with what was happening and I lashed out at her the most. I had such an incredibly hard time allowing another social worker in My home to take care of MY husband. To this day I'm not sure I fully comprehend what I was feeling, but I do know that I had an extremely difficult time allowing her to come into my home and work so closely with my husband. And for that, I am sorry. I know now that I should have been a little more accepting of her help. Through it all, Joanie was fantastic and did everything she could to work with us together as a whole unit. Joanie, I apologize and I am grateful to you for everything.

During one time in particular while Joanie was working with Doug and the cane in the neighborhood, he fell on the sidewalk. When he came home and was badly bleeding from his leg, I was furious! All I could think is she was the person who was suppose to be teaching him to be safe. How could she allow him to fall and get hurt?! I'm not sure what the purpose of that rant was, but I just felt the need to say it. That was not her fault. Accidents happen and I know she didn't intentionally let him fall. I think I just felt like I should have been there to save him from falling. I wasn't there...

Fast forward to the present. Today Doug is completely independent. He keeps track of his own medication, he does his insulin as independently as he can ( I still draw the correct units). He takes care of all his personal needs. He takes the bus wherever he needs to go and most importantly, he takes care of our children.

I still have a difficult time accepting where we are today. There are times I am grateful that he is home and takes care of the kids and the house, but there are many other times I wish we were a 2 income family. I wish we could afford a home of our own and had a decent car to drive. I wish we BOTH had careers that we enjoy and that I didn't have all the pressure of taking care of us financially. I wish we could have had the lives that I feel like we deserve, but I do know that we have the lives God wants us to have. I need to be OK with that ~ and in time I will be....