Tired and Looking for the Light At The End of the Tunnel

As I sit here in my oversized swivel chair with oversized pillows, looking across my office and through the sliding glass door at the rain, it appears that I don’t care that I should be up and busy. There are clean sheets to put on a bed for company, two bathrooms to clean, a shower to be taken, a suitcase to pack, and a 2005 Suburban I need to take down the street to see why the ‘check engine’ light is on before I drive it 120 miles to an office meeting. I need to leave my house in 1.75 hrs. But I am tired.

Do I Really Not Care?

I do care but I’m too tired to get up yet and get started. Recently, I explained about my sickness which turned out to be pneumonia and bronchitis. More than three weeks later, I am still recovering.

This day, This week, This month, I am Discouraged

Some mornings, it’s more difficult to get out of bed than it used to be. I do though, because I have to. Jess needs me. She needs me to feed her, to get her clothes for the day, to brush her hair, to brush her teeth, to pack a bag for the day, and to answer her incessant questions. Once I’m up, I’m up. I almost never go back to bed even though sometimes I want to.

Can I say it again?

I don’t like to say it, but I am T I R E D!!!!!!  Do you hear me? TIRED. Like really, really tired. I do say it but I don’t think many people really hear me. Since I got sick, I can’t seem to get beyond being tired. It is extremely frustrating and a real downer.

Am I really worn out from the years of the struggles? I’ve been doing so much by myself for so long:  Twenty-nine years of caregiving, the last 10 of which have been as a single parent; Trying to find a place for Jess and failing; Trying to balance single parenthood with a career so that I can support us while trying to care for Jess when there wasn’t enough care to go around;  Watching my youngest daughter first as she was dying, then miraculously surviving, then in recovery for years;  Giving up my career to stay home and care for my girls; Trying to maintain and manage a household all by myself on a poverty level income; and now, fighting the physical and mental effects of an autoimmune disorder. As time passes, it becomes more and more obvious that I need to live two lifetimes.

I Am Struggling

This is something I don’t like to talk about except to a few people. So, this is just between you and me. Yesterday, I kept saying I was filled with hate. I know it’s not really hate though. It’s bitterness; a bitterness that grows stronger all the time. I often feel so alone in this challenging life. On low days, it feels like a lifetime sentence of constant challenge and difficulty. A lifetime that needs to last for two lifetimes. The pressure is on to live forever. There are people around the world that can relate and they understand. Some have reached out to me via social media to say they get it.

Each day I push forward to make it through the day; each day, wishing I could get more of the things done that I need to do. Finding the strength of courage and attitude that I used to have requires digging deeper. Lately, I cry more than I used to. I no longer feel like a tough strong ‘special needs mom’ and instead feel like a wimpy crybaby.

It’s Okay To Be Discouraged

For without being discouraged, I wouldn’t fully appreciate the better times, when, even though life is still difficult, it is easier than other times. Experiencing discouragement helps me to more fully appreciate the special moments, the rare getaways, the moments of getting to enjoy the serenity of nature’s quietness and beauty.

My best friend’s mom passed this week. She was 95 and led a long and wonderful life. When my friend called to tell me, the blessings of her passing from this life were temporarily overshadowed by my friends grief. The grief I felt through the phone call was the same as if she was standing in my living room even though she is 600 miles away. It was difficult to talk to her without fear of totally losing it emotionally which I couldn’t afford to do because Jess was here.

Jess gets disturbed when I cry. However, I cried and she heard it and wouldn’t stop asking questions. I explained that our friends’ mom had passed. Jess understands that it’s a sad thing for families. She then cried about the death for the next couple of hours. Jessica’s actually so good at it she could be a professional mourner for hire.

“When I Don’t Have Parents Anymore”

Yesterday, Jess surprised me by spontaneously bringing up the topic of the plans for her life when I am gone. She wasn’t upset and was being very matter of fact and mature about it. So, we had an open discussion about my plans for her future when I am gone. I was able to put it into perspective for her by telling her about the recent passing of the mom of another acquaintance she and I know. This man is in his 50’s and has a physical disability that requires full-time assistance and care. Jess was very interested, listened to the facts, then followed that up with appropriate questions. She was almost excited about the aspect of being more independent (her perspective) when I am no longer here.

But No One Can Care For Her Like I Do

I thought back to when Kate from Finding Cooper’s Voice wrote “I felt that no one could help Cooper as much as I could. I was the best at it.”  It is exactly that line of thought that puts the pressure on to live the two lifetimes.

I KNOW I am the only one who totally and completely gets Jess. I KNOW she loves me like she loves no other. Jess and I have an incredible bond. It feels like we grew up together. I have always felt a huge burden and worry about how Jess will be so devastated and feel so lost once I am gone.

Since we were having such a good and open discussion about the topic of my passing, I told her about my idea of making more videos of us talking together so that she could listen to them when she was missing me after I was gone. I described a specific idea for a video. She and I have this scripted dialogue that she loves and it is about when we got her dog Abby. Her reaction to my idea was kind of blasé.

Then came the reality check. Jess said, “Or, we can make more dog videos.”

Hmmm, really??

I said, “Yes, we can. But you don’t want any videos of me to watch when I am gone and you are missing me?”

She bluntly answered my question.

“We can make a few videos of you, but mostly about dogs.”

Suddenly the whole discussion solidified for me and I knew she will be okay. In the future, when it is my turn to pass on, she will cry hysterically for a period of time just like she does for every other person when she hears of their passing. Jess will miss me and talk about me and then move on with the next stage of her life. Apparently, I don’t have to live two lifetimes, and I am relieved.

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