ALWAYS MY BABY
After 30 years of raising my daughter, the fact remains that I need help with her, and that fact bothers me. It shouldn’t, but I find it to be embarrassing. I don’t like to impose on people and, quite honestly, it still makes me feel crappy when I get a no. The dread often keeps me from admitting that I need help in the first place.
Jess has a brain malformation which is the root of her autism, cortical blindness, and developmental disability. The three diagnoses are woven together and difficult to separate, yet the combination is exponentially more challenging as compared to the sum of the three.
Jess has been part of my life forever minus a few years. Always a blessing, she has filled my life with meaning, joy, laughter, fun, and soul penetrating unconditional love. Truly, we often seem like the same person.
Every night when I tuck her in, I look at her and see the baby that I held and the child that I cared for. Her innocence, trust, playfulness, smiles and giggles are forever unchanged. Only now, she is living in a grown woman’s frame.
SHE IS AN ADULT
She is child-like in many ways, but also has adult thoughts and wishes. Like other young adults, she talks of living independently, getting married, and having a family.
Should I tell her she can’t have those things? Would she believe me? Would it break her heart? Yes, it would.
I respond to such comments by explaining that she still has a lot of independent living skills to learn first and that we need to make a list so we can work on them. That satisfies her for a while; then we repeat the cycle.
I WANT MY OWN ADULT LIFE TOO
In a recent tired, weak, and run down moment, I allowed myself to envision an entirely different future for Jess and myself. I imagined what it could be like to have some flexibility – some freedom – from this eternal responsibility that I readily embrace. The aspect of having time for myself to socialize, meditate, exercise, do yoga, travel, (i.e. enjoy life) etc., was a foreign thought that felt weird to even consider. Nevertheless, it was like an unexpected cool breeze on a hot summer day. It was a hopeful and uninhibited vision of my future that I had honestly never considered.
Picturing those things triggered near desperation to find a way. I reached out to someone to hear me, to offer feedback, give suggestions, to understand how much I need hope for the future. My concerns were dismissed with the discouraging reply, “I’m sorry, I just don’t see any other options.”
Then I shut down.
CHRONIC STRESS HAS CONSEQUENCES
Autism life = CHRONIC, every-single-day stress. There are serious consequences to that chronic stress. It can cause inflammation and fatigue, can also be a trigger, can exacerbate, and can cause illness. As a single parent of a very dependent adult with disabilities, stress has been a major factor for most of my life.
In fact, my stress began before Jessica’s diagnosis – before her birth even. The stress flowed continually from my challenging teen years, to a teen marriage and teen pregnancy. On top of that, add 30 years more of chronic stress.
Like most special needs parents, I feel the urgent need to live a very long time. Yet the reason I need to live a long time is the very reason that I probably will not.
This life of stress has made me sick.
ADDRESSING PHYSICAL HEALTH
My non-existent life plan did not include scenarios for the what-if’s of having chronic health issues. Yet, here I am. Living the life.
Symptom #1 – Fatigue – Seriously though, how in the world would I have known? I’ve been exhausted for the last decade at a minimum. Extreme fatigue eventually became an obstacle and interfered with my ability to function.
Symptom #2 – Brain Fog – Brain fog is REAL, and it frequently consumed me. I had a significant struggle with memory and word recall.
Symptom #3 – Hair Loss – Hair loss was the first symptom I recognized as an indicator of a “real” problem. At first, I ignored it like any good nurse would do. Then, six months later, the significance of the hair loss could be felt every day when I washed my hair. Not only could I feel that my hair was getting thinner and thinner, but also there was this tangled web of hair woven through my fingers after every rinse. Finally, I had to admit to some close friends that I knew something was wrong.
Fifteen months have passed since my hair began falling out.
It’s been 8 months since I began my journey of diet changes with hopes of improved health. It’s been 7 months since I began medication to help my autoimmune condition and 3 months since I recovered from pneumonia. My days now seem to be organized around a schedule of medicine and supplements.
I have done a lot of research – trying to find pieces of the puzzle to improving my health. Beyond medication, supplements, and a specialized diet, the obvious helpful things are meditation, yoga, and exercise. Why did I never pay enough attention to grasp that exercise is anti-inflammatory? Maybe because I have been tired for so long that staying upright all day was a big achievement.
MENTAL HEALTH – FACTOR IT IN
Depression. I have experienced depression as long as I can remember. It is just a part of my life and a part of who I am. Self-awareness helps me keep a gauge on where I am with things. When I detect my mood is dipping too low for too many days, I take deliberate steps to pull myself back up and keep moving forward.
These last 3-4 months have been especially challenging. Every day, I find myself thinking and stressing about hair loss – what else can I do, what else can I try, what have I missed? As I ponder the things I need to do to continue improving my health, I get back to that not so new realization that my time is not really mine.
My days are dedicated to Jess, work, Jess, and sleep. Play that on repeat. Since my focus this past 8 months has been improving my health, I have found it to be especially discouraging to not have time to routinely do some of the extra activities that I know could improve my health.
THE BIRTH OF A SHORT-LIVED DREAM
I personally know two courageous and wonderful moms who have been able to find residential placements for their adult children. Their children successfully live independently with assistance. This is not something I ever considered for Jessica.
Chalk it up to a momentary glitch in my force field. That shield I keep around me to cope with the fact that I live alone in this world.
Jess was having one of her days of repetitiveness. She was stuck on wanting to move to some small town in Tennessee. My patience and soft touch aren’t what they used to be and I got tired of hearing about this fantasy move. As a result, I just straight out told her that she would never be able to move there.
Literally, in a few blinks of the eye, I contemplated whether or not I wanted to tell Jess about someone from her high school class who recently moved into an apartment in a supported living community. The catch was, before I could introduce that concept to her, I had to take an open and honest look to decide if that scenario was something I could or would ever consider for Jessica.
I HAD NEVER BEFORE EVEN CONSIDERED IF I WOULD CONSIDER IT
I was in a low moment, exhausted, not feeling well, and discouraged. Based on how I felt in that moment, and for the first time ever, I decided that yes, it was something I could consider. Because – and this is important – it is what she most desires.
It is what would be best for her for when I pass on from this earthly world, and it is what would be best for her siblings. For me, it instantly felt like hope. Hope for her and hope for me.
Hope laced with betrayal, defeat, and abandonment.
VISIONS OF A LIFE FOR ME
While she got excited about the possibilities of things that were essentially unrealistic, I allowed myself time to dream, too.
For the first time in my life, I allowed myself to envision what it could be like to have some flexibility and freedom from this eternal responsibility that I readily embrace. I could picture an unrestricted schedule, travel, and a relationship – with my life.
The aspect of having time to enjoy life and take care of myself was a foreign thought that felt strange to consider. Nevertheless, it was like an unexpected cool breeze on a hot summer day. It was a hopeful and uninhibited vision of my future.
THEN I WOKE UP
It was then. That next morning as I woke up, my waking thought was – how ridiculous! This thing I said I would consider isn’t feasible. The level of independence required, even to live in a supported setting like that, is beyond practical for Jess. It is not a possibility.
Her vulnerabilities are eternal.
Jess does not have the required skills. I know because I have worked with her trying to teach them for more than two decades. Other than a lack of self-care, self-help, and independent living skills that are necessary, there are safety factors such as risk of fire from trying to cook, risk of abuse and sexual abuse, risk of wandering (magnified by cortical blindness), and the list goes on and on.
I had allowed Jess some hope and had allowed myself some room to dream. Then, the reality that I have been married to for 30 years came crashing back down, and I felt such defeat – such massive discouragement. I wanted to give up, to withdraw and isolate myself. So, that’s what happened and I allowed it. It is what I needed – for a while.
LEARNING TO SAY THE WORDS, ” I NEED HELP “
After that cycle of hopes, dreams, reality, and disappointment, I knew I had to figure something out. There must be some kind of solution that can be found where Jess feels like she is more independent, and I have more time to live a life.
I reached out to Jessica’s Support Coordinator for help. When he came for a visit, I did not hold back one bit. I explained the whole thought cycle including my concerns about my physical and mental health.
“What are our options? I need help ,” I flatly but emphatically and repeatedly stated. “I cannot do all of this anymore, it is killing me,” was how I ended my plea.
Jessica’s Support Coordinator is wonderful. A genuine, kind, and caring person. He listened to me and heard me. He agreed that the idea of Jess moving into a supportive independence placement was not practical.
What followed was a lengthy conversation about technical definitions of respite, how it fits with the waiver, and the extent of our options. We set a goal to seek approval to re-designate some of her waiver budget for a maximum number of respite hours for the remainder of this fiscal year.
I had said that I need help and a weight was lifted. The meeting was encouraging. I felt that he heard me and understood the depth of my strain. Once again, there was hope.
I PICKED MYSELF BACK UP
My next step had to be pulling myself out of the slump – out of this self-imposed isolation. I started with movement. One day, I spontaneously walked around the neighborhood. A couple of days later, Jess walked the neighborhood with me. Most days, I moved around inside my house. Often, it was repetitions of climbing up and down my stairs. Occasionally, I stretched and did simple exercises with hand weights.
Then, I made a decision that I had to be intentional with my effort to get out of the house and be around people. It was okay to not be with people, but be near where other people are socializing and then benefit from their energy.
I reached out to a soul sister friend that knows this life. She invited me to meet her and her spouse for a casual dinner and drink, and I did way too much of the talking. There was so much talking I needed to catch up on. It was great to be out and especially with people who understand the struggle.
Intentionally getting out and doing things is getting easier. Not just easier, but I’m finding myself wanting to get out and go. It would be extremely difficult to convey what a significant change this is for me.
I am now feeling much better: less tired, more energy, improved mood. My hair loss is showing signs of slowing and I recently celebrated with a new haircut.
Did I wrongly set myself up for the crash? I had already been struggling. Should I have never let myself go there and never dream? Should I have stayed safely in my bubble and just kept pushing forward? Did I make things worse for myself?
The answer is no. It is part of the journey and it pushed me to admit that I need help to someone who is in a position to help.
Sometimes, it takes these moments to truly move on to the next stage to search for new solutions. This whole episode was a motivator for me to figure out the next option and work towards a new goal.
We will eventually find that sweet spot.
** My parents and another grandparent each keep Jessica one day a week. My parents also keep Jess for me overnight one night per week. This help is during the weekday and helps me maintain my work schedule. They do this because they love Jess and they love me. Their help is immeasurable and keeps me sane. The help I am referring to in the blog post is when I need help outside of our routine schedule, and help for the future. **