Tuesday, February 9, 2010

The real work begins

Coming home to live had been my ultimate goal, and I was so glad to have made it! Many people in my situation might not have been fortunate enough to live at home for various reasons, so I felt very blessed. Some people might not have family and friends who are willing to be their caregivers, or they might not have a nice enough house to live in, or the means to support their disabled lifestyle.

A few of the best things about being home were that I no longer had to deal with unkind, overworked and/or incompetent hospital personnel. Actually, most of the people I came into contact with in the 15 weeks I was in the hospital were very kind to me and tried hard to make me feel dignified and comfortable. However, it was the bad ones that tended to leave the strongest impression! It was also wonderful to be back home where my friends could come see me and spend time with me without having to worry about keeping their visits to hospital hours or paying to park in the parking garage! One of the very best things about being home was no more hospital food! I'd tired of hospital food very quickly and was glad to have some different options. However, when I got home, all I wanted to eat was box macaroni and cheese. I seriously ate it every day for at least two of my three meals. This went on for over a month before other things started appealing to me.

Now that I was home it was up to my mom to do all of my personal care, like dressing, bathing and things like that. It was a ton of work, especially since my mom was in charge of doing basically everything herself. There were no more nurses and aides to take care of me after she had left for the day. Mom was my primary caregiver and did most of my care herself. The day after I came home to live my mom bathed me, dressed me and washed my hair all by herself. It took hours and I wasn't up until noon! It was a steep learning curve, and it took her a while to get faster at these tasks.

My mom knew that she would need help caring for me since it takes two people to dress me, transfer me and things like that. My mom asked my older sister Annette if she would be willing to move back home so that she could help take care of me. It was hard for my mom to ask Annette to move back home since Annette had been living independently for more than five years, but my mom didn't know what else to do. As much as Annette didn't want to leave her life in Utah, she prayed about it and felt that moving home was the right thing to do.

Annette wasn't moving back home until April, however, so that meant that there were two months where my mom was basically on her own. Different ladies from my church would come over every weekday morning to help get me dressed and up for the day. In the evenings my younger sisters or my friends would help my mom get me back into bed and settled for the evening. In some ways it was difficult for me to have my mom, my friends and our acquaintances from church doing things for me that I should've been able to do for myself, like dressing and bathing, but on the other hand, I was so thankful that there were people who were willing to help care for me that I soon grew accustomed to the fact that this was how it would have to be for the rest of my life. Annette moved back home in April, and that was such a help to my mom (and, of course, to me).

Most of my days were exactly the same. My mom and Annette would get me up in the morning, and I would sit in my recliner all day. I spent my days watching TV and movies, and visiting with friends when they would come over. I know it sounds lame that I watched TV all day, every day, but that's what made me happy. Prior to my accident, I was so busy in nursing school as well as working almost full time, so I didn't have much time to watch TV. Now that I had all of the free time in the world and no expectations, all I wanted to do was watch TV since it was something I enjoyed doing. Sometimes people would ask me what I did all day, and I felt like a loser telling them that all I did was watch TV, but at least I was happy. In hindsight, I realize that I was just lost and trying to come to terms with my new life. All of the plans I'd made for my life went out the window when I became a quadriplegic, and now none of my goals still seemed to apply.

As the months went on I continued to adjust. It wasn't easy, but I was still happy and positive, so I felt like I was doing a remarkable thing by staying upbeat. I managed to not plummet into depression, as so often happens after a tragedy. My faith is what got me through this time. If I didn't have a strong spiritual foundation, I never would've made it! I knew that breaking my neck and becoming paralyzed was part of God's plan for my life. I didn't know why, or what I was supposed to accomplish, but God had a mission for me. I firmly believe this, so that's what enabled me to press forward with a good attitude.

One of the hardest things to deal with after my accident was the loss of some of my friendshipsfriendships that I was sure would continue, even if they diminished or changed. As the months went on, sometimes weeks or even months would pass between visits from some of my friends. Visiting with my friends was so important to me, because it was something that made me feel normal in a very abnormal time. Most of my friends moved on with their lives, but a few stayed loyal and true.

There was one friendship in particular that was very difficult for me to lose. I had been friends with this person for several years, and we were each other's best friend at the time of my accident. It was extremely painful to lose touch with this person. I didn't feel important to this person anymore, and above all the things I lost due to my accident, this was by far the most painful. I shed a lot of tears and felt a lot of grief over the loss of this friendship. I'm "Facebook friends" with this person and I occasionally communicate with them over Facebook, but that's the extent of our relationship. I'm grateful for the role this person played in my life, and I only wish good things for this former friend.

A few months after I returned home my mom started investigating different handicapped accessible vans so that we could have our own transportation. My mom did her homework and spent a lot of time researching different possibilities since this was going to be a huge investment. We knew we wanted a minivan with a ramp, as opposed to a full-sized van with a lift. We found a company in St. Louis called United Access that converted regular minivans into handicapped accessible vans, and we decided to go through them. The process started by buying a normal minivan, and then it was converted so that it would be able to accommodate a wheelchair. The conversion took several months, and the van wasn't finished until September 2004.

Although I was excited to get our van, I had some reservations and reluctant feelings in regards to getting a van because I dreaded going out in public again, especially to places where I would be confronted with people who knew me before my accident. I remember feeling very anxious and nervous my first Sunday back to church. It had been 10 months since I'd been able to go to church, and I felt like it was the debut of the "new Heather." Although I'd known everyone at church for a long time, I was now so very different physically, and I felt like a completely new person even though I was still the same inside.

As I think back to the first year after my accident, I realize how hard it was for me and my mom. Thankfully, it didn't seem that bad at the time as we were going through it, but looking back on all that has happened, I realize just how hard it was, and far we've come since then. Each passing year has gotten easier as we've developed a routine and become comfortable with our new reality. I am truly so happyhappier than I think I've ever been. Sure, I can't help but feel disappointed that my life isn't what I always hoped and dreamed it would be, but I still have a great life—better than a lot of people who can move! I'm so grateful to the Lord for giving me a gift of joy that enables me to be happy, even though I'm not living a normal life. I'm incredibly blessed, and I can't/won't complain!


Kathe said...

You are so blessed to have a mother like that. She is so wonderful and truly loves you. Being around you guys make me want to be the best that I can be.

222 said...

Before I even saw your comment, I was going to write exactly the same thing about Heather's mother.

I am just speechless reading about your life, Heather, and how you have adapted, and how your spirit is so strong and positive.

Anonymous said...

Your blog has touched me and helped me a great deal! I have a severely mentally disabled son and your comments on finding happiness and your acceptance have helped me to put things in proper perspective. I noticed that you don't have any paid home health care workers. I was wondering whether your state would allow you to use medicaid to pay for some hours of home health care each day. Thanks again for this wonderful blog! I check it daily!

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