There are some decisions that I have made in my life that were my best option at the time, but still just shitty choices to chose from. One of those was when my twins went to live in a facility during my divorce. You could never be harder on me or say anything worse to me than I have been to myself for that decision. It is also something that I never talk about. I thought I would now.
When I was in high school, I took a job as a home health aide. I was in someone's home taking care of their child who was dependent for all care..... just like mine ended up being. I had been babysitting newborn babies since I was 11 years old. Taking care of infants and disabled individuals was natural for me. After getting married I knew I wanted to have kids. I was 24 years old when I was pregnant with my twin girls. There had been no problems during the routine checkups until around 6 months when I started having premature contractions. I had to go on disability and bed rest and wear a monitoring belt. During a scheduled visit, I started showing symptoms of preeclampsia. My blood pressure was 200 over something and I was spilling 4+ protein in my urine. I needed to be induced right then. My husband didn't want to find another parking spot downtown so I walked from the doctors office to the hospital in house slippers (my feet wouldn't fit into anything else) in the snow. I was put on a mag drip and they started inducing me all the while making me lay on my left side. I didn't fully realize the risk I was in for myself, I was just nervous about having to give birth that day. My husband left the hospital to go back to work, leaving me there wondering if I was going to have a seizure and die. That was my first clue that I may have chosen the wrong life partner. He did return after for the birth but it was an 18 hour long process. After my girls were born they were taken straight away to a side room for evaluation and oxygen. I really only remember asking everyone why I didn't hear them crying. No one answered me. I also remember the doctor screaming for someone to give him packing material because I wouldn't stop bleeding. I didn't get to see or even touch my girls before they took them to the ICU. I was still at risk, but also still oblivious. The nurse brought one of the girls (to this day I don't know who) into my room via incubator and as I looked at her the nurse simply said "with kids like these we just don't know how they'll turn out. We'll just have to watch them during the night"..... kids like these.... I have despised that phrase ever since. My husband left shortly after.... he was tired. Now I am alone in the hospital having given birth to two girls who may not live through the night. I've never felt so abandoned. But, that's also where my inner strength started getting stronger.
I was in the hospital for 3 days. On day 4, Taylor was able to come home with me but Mackenzie needed to stay in the hospital. I was told that someone had hung the wrong IV fluid bag and that they were having a hard time controlling her blood sugar levels. Now I am home with just one of my children, my husband went to work and I didn't know when or if I would make it back into the hospital to see Mackenzie. It wasn't a week before Taylor went into the hospital for having a seizure where she had stopped breathing. She was admitted to the hospital and shortly after Mackenzie was transferred over to join her. Finally, I had both of my girls together. They didn't know what all was wrong with them, just that the EEG showed severe abnormalities. They were in the hospital for almost a month before I brought them home, both on monitors. I tried my best to keep everything normal. They both cried constantly, they both wouldn't keep any formula down (projectile vomiting with every feeding) and they both had seizures 100s of times a day. I was home alone trying to stay positive and happy and basically not let them die. It was very stressful.
Fast forward to one year later and now I am back in the hospital having just given birth to Adam. We had just bought a house and the day he was born was when my husband had everyone arranged to move us. This was before cell phones and we didn't have a phone line at the new house yet. By the time he came back up to the hospital I was ready to go home. I had my kitchen unpacked before Adam was 24 hours old. I was still just trying to stay normal. I didn't feel normal at all. My girls still didn't have a diagnosis, they hadn't met the typical milestones and I was now home alone with all 3 kids and no help. My husband still played in his golf league and went to work 12 hours a day ..... I was lucky to get a shower. I was so desperate for help that I started calling area churches for help. Finally, one young pastor called me and said that no one was available from his congregation but he would like to try to help. He came over once a day to feed Adam so that I could not feel guilty for just a little bit. Luckily Adam was a very easy and pleasant baby. My girls were still having a lot of health issues and a ton of seizures.
My marriage was no longer doing so great. We couldn't agree on anything. He didn't feel that anything was important enough for him to miss work, or miss a golf game or miss sleep. I didn't lose the weight from being pregnant. I went from barely 100 lbs and a little 24 inch waist to being fat and tired. My husband would kick me in bed while saying I was too fat and taking up too much room. He would push me while in the kitchen saying that I take up too much room. I was excited to have a huge corner tub until one day he saw me in it and said I looked like a beached whale. I was miserable. I needed help.
I knew from working in other people's homes while taking care of their handicapped children that there has to be some help for me too. Finally I found someone at the State level who knew what the Model 50 waiver program was (they had changed names a thousand times by now). We applied for services but were denied help. The reason given was that the community was meeting our needs. I went around to community organizations and asked for statements of determined needs and what they were able to provide. I took that information to the appeals court and won. It wasn't a real victory, it only meant that I was able to apply again. I applied again and was again denied, this time they said that my girls didn't meet ICFMR level of care. I still don't know what that is an acronym for.
I was literally losing my mind. I couldn't imagine how I was supposed to make our lives better. I finally broke down and found a facility where my girls could live so that they could get 24 hour care and I could get some help. I got a divorce. I didn't have anywhere to live, I didn't have a job, I didn't have any money, I didn't have any education and now I didn't have my kids. Adam spent most of his time at his grandma's house, I didn't have a place.
I went to the facility to spend time with my girls every single day. I had hoped that they could get the care they needed and when I finally got a job and a place to live that they could come back home to live with me. This is when I found out what goes on in those places. It was bad. Very bad. I met another mother and we looked out for each other's kids whenever we were there. I got a call from her one day telling me that Mackenzie was having a really bad seizure and they refused to call the squad or me. She was calling me from a payphone to tell me this. I called the squad and I rushed over. Kenzie ended up needing to be induced into a coma in an attempt to save her organs and brain from this horrible seizure (status epilepticus). After that I contacted a lady I had heard of who worked as a patient advocate. I begged her for help with getting services so that I could get my kids out of that hell hole. She was able to get me home care services that same week. In return, I took my little blonde twins to all her lobby meetings as a success story.
I fight hard for my kids. I will never give their care up to anyone else ever again. I didn't know it was going to be that way.
Mike knew all this about me...... many didn't..... until now...... I know part of what he loved about me was that he knew that as fierce as I was with my kids and as effective as I had become in standing up for their rights to medical treatment and care that I would do the same for him. I had proven myself to be exactly who he needed to make sure that he never ended up back in the same hell hole that he was in. He knew that I loved him just as fiercely as I loved my children.
No comments:
Post a Comment