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.”
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.
I would give my life to change your place just for a moment so you can rest and stop feeling tired.
I never feel tire of saying how much I admire you, I always give you as an example to the rest of the people. You deserve the recognition of the whole world because of your work
I cannot understand how that mother’s pain feels beacuse I am not a mother and all those anger and frustrations of having to live two lives, but I do understand what it’s to feel alone, responsible and guilty of what happens to others, and is something that I don’t wish to anyone.
Please, don’t anticipate to your going. You still have a long life to live, grandchildren who will come, family Christmas, more trips to Disney… you know that Jess will continue maturing, She will continue to give you joy, frustration, anger, tears, laughter and much more, but at the end, all children generate that to their parents. So you will know what to do when the correct time arrives.
Again, If I could change your place just for a second so you can rest, I wolud do it. To alleviate all that tiredness.
You know that I am here for everything you need … Even if you need someone who can care Jess, I WOLUD LOVE TO DO IT!!!
You are not alone
I love you Val, more than you imagine!!
You are the sweetest ever. Thank you so much for your words.
When I wrote this post I was truly weary after battling pneumonia. I wrote this to be transparent about the challenges we face, as I never want to present a picture of everything being rosy and potentially making other moms feel less than adequate. I want others in tough situations to know that we have our tough spots too.
Also when I wrote this, I had recently received my diagnosis of my autoimmune illness. Between that diagnosis and having the most difficult time I’ve ever had recovering from a respiratory infection, I was feeling particularly vulnerable in terms of health and well being. As with all things, I try to reflect to see what I can take away as a lesson. What I had to really take a good long look at was my eventual mortality and it made me be more active in facing the concept of Jessica’s future without me.
I’m good, at least for now! Thank you so much for your concern!
Val, yes, I’m sorry! After I put the comment I noticed the date. Sorry for my distraction.
But I think that always is a good time to look back and see that everything is better and that you could go out of that situation… there’s no doubt that I’m glad to know that is just an anecdote from the past.
Continue going in this way Val! This is a really good example that everybody CAN do it!!
Never apologize for any comments you make here!!! I love hearing from you. I figured you may not have seen the date, but I loved what you said so much!
We understand the exhaustion! For me, with the exception of the moment it is said, I cannot absorb the empathy but I hope you can. I’m sorry you are in the thick of it. Thank you for sharing this–Everything you share of Jess, I believe she understands–and she has given you an amazing gift. This is hard. There is no doubt–thank you for being a trailblazer. xoxo Jodi Lynn
Jodi, thank you! Becoming a part of this autism blogging world has helped me understand how many people do understand. That has been a great help to me for the past several years. Before starting to blog and getting feed back, I truly felt that there was no one else out there that had a clue of how complicated and difficult my life has been.
I’m so pleased to be able to share Jess, she is such a blessing and IS an amazing gift for sure.
Just wow. Glad you could feel a little relief. Love you.
Thanks Judy, love you too!!! You and Pam & your family have been in my heart and on my mind. Love you all bunches!
Thank you, Val for having the courage to speak the truth about a subject no one wants to talk about. You are not alone on this journey through autism. We have all had these feelings and most of us are tired. Autism is exhausting both for the person with it and the people who support him /her. And thank you for reassuring us about not having to live two life times. I have been worried about that for awhile.
I hope you find some rest and relaxation sometime soon and send best wishes for healing and recovery from your health issues. Hugs to you and your sweet girls. Take care of yourself. ??
Inez, thank you so much for your support as always. Definitely a tough topic to address so openly.
I think the discouragement I have felt of late stems from feeling so utterly tired while also seeing what I hope is a really long road ahead. I am working on feeling better and I’ll get there! Sooner rather than later I hope ?
Hope you and yours are well!
So, without really saying, you know I get it. I was a single parent within my marriage for the past almost 25 years, so I understand the feelings completely. No one can ever understand the stress of the day to day with autism unless they live it. Walking on eggshells, trying to gauge moods, cajole and redirect focus to prevent complete melt downs takes its toll on you mentally and emotionally. Having to learn not to take anything personally… whew. Praying that you do your best by them, and yet wondering when ‘your’ time will be… Just feel my love and warm hugs with big knowing. You are not alone, sister. Never.
Thanks Jayne, I completely understand your comments. All of them! I do feel your love and hugs and I hope you feel mine back to you! Thanks Again!
Sending you strength and love from NY. You are stronger than you know. I wish the best for you and your daughter. I’m am so sorry for your recent illness and there is so much value in this entry.
Thank you so much, I deeply appreciate your well wishes and feedback on the post! It does mean a lot to me.