Are you okay?
I do not want this December to be like the last one.
I do not want to talk about vitamins, vaccines, and the virus.
I do not want to worry. Worry about the people I love, the people I know, everyone in my life.
I do not want to pretend to be happy, and I do not want to live in sad.
I do not want to make plans and have them turn to sand.
I do not want to dig any deeper to find joy.
I am not okay.
I have been here before.
I have had these feelings before. The reasons were different.
I know I have been here before.
I planned and packed for the holidays. In ways, my friends could not understand.
I unpack. I set the room. Her own duvet turns it into her own bedroom.
I remembered the spare headphones. I remembered the plastic stim toy. I bought the must-have foods.
I re-organised most of the furniture. The wheelchair must get through.
I arranged the activities in advance and prepared everyone.
I knew where the nearest hospital was, and I packed the medical reports. Just in case.
I cooked. I served. I entertained.
I did well.
I got to it all.
I think it will be okay.
I forgot to pack my food (I don’t eat meat), my book and well a couple things that make me…me.
It will be okay.
I wake. I listen. She calls. I go. I calm fears I do not understand.
I go back to bed. I sleep.
I wake. He coughs. He quiets. He coughs. He reaches for his asthma pump. I hold him.
I feel the morning. I tip-toe out of the room. I set up for the day ahead.
I see them, my younger children, racing on the shoreline. My heart swells because they are mine.
I smile. I wave. They enjoy the beach.
I sit here. I hold her hand. The sand and the wind: too much for her.
I'll go to the shore tomorrow.
I'll go and dip my toes.
It will be quick. I’ll be back. They will need me again.
See,
I've felt this before. I felt all this, and I felt nothing, all in one go. But then
I learnt that all and nothing can work themselves out, when
I dared to stop and ask them, what are they all about?
I heard them say: we are trying to let you know it’s okay to not be okay.
I asked in a shaky voice: what is the way to being, “not okay”, as you say?
I heard them soothingly whisper: Come into the day quietly and softly before they all awake.
We will teach you what it means to not be okay.
I woke without the alarm. I started to write.
I wrote to God. I wrote to my heart. I wrote for all the ones like me.
I find sometimes, I bake. Sometimes I sing. Sometimes, I just sit and think.
I come into the day quietly and softly. I marvel at how much I pack into that short space of time, that makes me…me.
I'm okay not being okay.Are you? - Desirae Pillay 2021
Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.
Most people have an idea of what the worst circumstance is that could happen to them, and sub-consciously or consciously navigate their lives trying to avoid it. For some it is the fear of illness especially if their parents faced complicated health problems. For others it could be financial: the fear of being poor (no one fears being wealthy). For some it could be losing someone. Either when a relationship ends or when a person’s life ends. For parents of teens, it is a myriad of concerns that we fear. “The worst thing” can take on any form to different people in different circumstances. For myself, there were several “worsts” but none more than when it concerned Savannah.
Savannah And I at the Whitney Houston Show last year
Like many new mothers, when I became a mother for the first time, I had a certain level of obsession about how I wanted Savannah to be cared for. But then, when she was diagnosed as a person with cerebral palsy, my attitude switched between “whatever will be will be” to “follow every piece of advice” exactly, precisely according to the doctor or therapist or anyone who I believed had any experience in caring for a child who had significant challenges. Some days I felt overwhelmed by how much I had to remember about her respiratory issues, her physical challenges and her cognitive challenges.
Yet, like most new mothers, I was ever hopeful that my love was enough to save her from any and all obstacles. We were going to prove the world wrong and she was going to move out of my house by the time she was eighteen and attend university. I wrote a post some months ago titled “When love is not enough” about how we face that truth time and time again.
Sometimes the harshest circumstances create the most steadfast people.
So was the extent of my hope. My heart raced towards this idea only because on an emotional level, I was running from the possibility of Savannah never being able to walk and worse still, I was ever fearful of one day finding that she was not going to wake up. I fully believed with all my heart that this diagnosis of cerebral palsy was the “worst” that could happen. I ignorantly thought that surely once a baby is diagnosed with such a condition, they must be exempt from all other terrible issues?
But no. In fact that very diagnosis and later on the added complications of Savannah being a person who is autistic, taught me that she was never exempt from anything. Her life was like a magnet for all strange and complex health problems both physically and cognitively. If I thought I was overwhelmed by Savannah being diagnosed as a person with cerebral palsy, I had no idea that was only the very first inch of the iceberg of all her challenges.
During the first ten years of Savannah’s life, I went through a cacophony of emotions as I grew from being a teenage parent, to a divorcee, to being a single parent, to my parents marriage finally falling apart, to eventually building my own second marriage and becoming a mother to Talisa. All that in ten years! So it is no wonder that I struggled with depression for most of my life. I could not share this with my family because they believed it was a sign of weakness. When I married Michael this was further complicated when as I Christian I was told that I could not be depressed.
So continued my confusion about why I was here and even more bizarrely why, of all the women in the world, was I given a daughter who needed so much? If being depressed and having thoughts about suicide was causing me to be my own obstruction in receiving God’s love, what hope was there for me now in my role as a parent? As a parent who was struggling with post traumatic stress disorder from childhood trauma and other issues; I felt very lonely and isolated. While I could verbalise some issues to other women in my family and in my church; I was almost always left feeling inadequate. Michael tried very hard to understand this inexplicable, deep sadness but he could not undo what he had not done to me.
All he had to offer me was his love believing just as I believed about my love for Savannah: it would save us from further pain.
The truth of that belief became real about six years ago. I was having a very hard time coping with Savannah when she finished school. A few of our friends’ children with special needs were going to live in facilities and Savannah liked this idea. She did not fully understand what that would mean for her though. For a few days Michael and I were having these heart wrenching discussions about Savannah trying a respite centre for four days a month. It was difficult to admit that I was not coping with Savannah and that she and I both needed a break from each other. It was a tough conversation and one that both Michael and I struggled to find the right words for. Michael was listing off all his fears:
“We have worked so hard for her and it feels like we are giving up.”
“How can we trust them?”
“They don’t know her. What if something terrible happens to her?”
We face the storms of life, and we survive.
As I listened to him put into words what was also my fears, I surprised myself by my response. I said something like this: “What could be worse than what we have already faced? Our worst fears are already true. She lost her ability to walk by herself. Her doctors believe that she has a limited life span. But we are still here. Those things are true but we are still here. The worst has happened. It is happening and we are still okay. What more can we not face?”
That was a defining moment for me. As I said those words. It was as if I also reminded myself of all the “worsts” I have lived through. It had all happened already. The power of that realisation put into sharp focus that in the midst of all the chaos of life, I raised a family who are intact and thriving. It hit me so hard to realise that we had already lived through all the “worsts”.
Just before Talisa was born was probably one of the hardest times in my life and it lasted a few years. I was mourning the loss of my family as my parents marriage disintegrated, while coming to terms with Savannah’s additional diagnosis of autism and trying to be a good mother to Talisa who was a very demanding baby. The weight of everything at that time was incredible. I felt that life would never be happy.
But somehow here I was years later having this discussion with Michael about Savannah having an experience that I knew required a great deal of courage on my part. Like physical exercise that builds muscle, somehow I had grown mentally and emotionally strong in the areas of my life story that should have destroyed me. I gained the ability to remain steady and in control. I learnt to see life from other people’s perspectives which is a great ability when raising a family where a child is autistic and is also a person with cerebral palsy and other conditions.
So did love save us?
Faith Hope Love
What else could have given me the mental agility to be flexible and the wisdom to be emotionally vulnerable to become everything my life needed me to be. Being loved unconditionally by my husband was God’s gift to me. Learning to love myself for exactly who I was, and trusting God’s plan for my life, was my gift back to the loves of my life.
Love saved us. The “worst” has only broken us wide open to share it with everyone.
The hardest transition when you are a parent to an adult with a disability is that your child no longer has the safety of the pediatric ward when they become ill.
In the pediatric ward, everyone is in the same boat: parents looking after their children. Now that Savannah is sick again, she has to be in the adult ward where there aren’t any other caregivers staying with loved ones. So I’m an alien here.
On the plus side though we automatically get a private room because I’m not allowed to stay with Savannah in a general ward. It’s cheaper and easier to have me around or else the ward has to employ an extra nurse just for the adult with special needs. The nurses are really nice to us. I think it’s weird for them that they have nothing to do for Savannah but make sure that I’m administering the medication correctly. Bathing, toileting, lifting and carrying is all on me because Savannah is so anxious and doesn’t want strangers touching her.
The downside is that it’s a scary place when other adult patients aren’t so nice and we hear the yelling and arguing with nurses.
There is also an elderly lady in a room down the hall with dementia and at night she screams out names every couple minutes. It’s a little frightening to hear but at the same time I feel for her and her family. Being a caregiver to my child is more natural… Not easy just natural. But it must be so tough for this lady’s adult children to cope with the emotional and medical chaos of their elderly parent while maintaining their own lives. I said before.. Sometimes I learn too much about life.
Savannah’s doctor has a reputation for being the good looking doctor. He is Greek so I guess that explains it according to the nurses. All the nurses swoon when he arrives. When they ask Savannah if she thinks he is handsome, Savannah replies with a deadpan expression “No”. The guy is about her father’s age and as she says “eeuw” ?
For some ungodly reason tea is served at 4:30am so I’ve been awake since then. I’ve already showered, bathed Savannah, administered her meds (the fight against the nurses injecting her is less stressful each time) and I’ve tried to entertain Savannah by taking selfies with her and reading Anne of Green Gables, until she is sick of me and turns to sleep.
Then I have my own care pack and entertainment pack with which to pass the hours of interminable waiting for Savannah to turn the corner.
If you know of someone who is a caregiver and you want to do something nice for them: Take a close look at the picture of the items that make up my care/survival pack. By providing one or two of the items or similar items to a caregiver, you can make a real difference to their physical and emotional health. A subscription to an online network or a contribution to their data bundle are other ways of helping that are meaningful too.
When I have ways of coping in these stressful, unusual situations.. I’m less of an alien.
