Jilly Brandon

Opening up Facebook this morning, and this scene hits me like a thin wall of glass..and I’m lonely for this exquisite chaos. It is her room.

Toys are strewn about the bedroom, hospital bed unmade, and I spy my body hidden half underneath the bed searching for who knows what amongst the dust bunnies and carpet fibers.

In the center of it all a little girl sits, confined to her wheelchair, unaware that she is the axis from which we all radiate out from.. She is the sun, and those of us who make up her galaxy, are the planets. We react to how her day is going. It didn’t start out this way, but this is how we make sense and a strange and unique order has evolved from this state of disarray.

There is a continual fog that you exist in, and yet are unaware of it at the time. This thickening of the air is the blanket of grace and protection that cushions the blows of existing in this time and space.

I was just pondering how extraordinary it always was every morning as I entered my daughter’s bedroom. She would lift her little head up, as much as she was able, and would see me come in. Our eyes would meet, and she would smile, and giggle, and let her head drop back down onto her pillow with a thud. When I peered over into her smiling blue eyes the emotions were often too intense for her to handle, and she would “ pull a lip” and almost begin crying she was so happy to see me. It is one of the most pure and precious responses of love and attachment that I have ever encountered.

I still describe it, as each morning I pushed open the door and walked in as if she gave me a standing ovation just for showing up. How do I quantify a love like that? It is all consuming and staggering in its intensity. I miss that like a thirst from deep inside that cannot be quenched.

One of the many things I ruminated about as I cared for my girl was whether she was thirsty. It used to drive me nuts, the amount of guess work I did on her behalf. Every fiber of my being wanted to understand what she wanted, and needed, but there were no spoken words between us, only anticipating of what she could want. It was terrifying, and frustrating to not know if I was being enough for her, was I meeting all of her needs.

It is startling to come to grips with the fact that you are responsible for everything that this person requires. The responsibility of it all still feels overwhelming.

Am I enough… have I done enough, did I love enough?

These patterns of thinking creep in at 3:30 am, and settle like a warm blanket around my being. Oh the joys of being a middle aged woman. If I’m not whipping the covers off in the midst of a hot sweat, then I’m feeling chilled, and sleeping in a robe and socks.. glamorous… it is not.

Quieting the mind takes concentration, and diligence.

I began a new workshop the other day with my friend Sharon. It is called, “ Grief Share,” and many more of these same types of courses are held in Canada and the USA all throughout the year.

Although it’s been four years, five in September that I bade farewell until next time to my beloved daughter, learning to live, cope, survive, and yes even thrive through grief, is an ongoing learning process.

When someone asks if you are working your way through the steps of grief, not gonna lie, even though my face smiles, and I feel my head nodding like a maniacal robot, my insides scream, “ I have no idea how to move through grief.”

There are books to be read, courses to be taken, advice to be received, and given.. but as you breathe in one breath to the next..you just miss them….. and that sucks.

The world feels as if it exists over there somewhere, and you live in another dimension of reality.

Grief experienced means that love was known, and there is a quote that says, that grief is the cost of love. I suppose that is true, but slipping back and forth between gratitude for this person, and ache and longing to be with them is constant and chaotic. People can look at your life, and think you are falling apart.. and you are.. duh.. this is what grief looks like, and it looks different for everyone..

Often, it seems I can fool myself, and pretend that she’s just in the other room, or out with a caregiver, or at an appointment… but my mind still does not want to accept.. I can’t touch her, kiss her, or hear her giggle that lit up my world.

It is too much…

I describe my life with Bianca as living in the balance between grieving daily, that today would be her last day….then …. we have today.. and I will not waste it on wondering if there will be a tomorrow.

Sitting around the table with these other people who were in grief because they recently lost someone they loved, or there had been years separating them from their beloved… we were the same. We are bound together, being vastly different, but connected through our sorrow.

The empathy was palpable… We listened with respect and quiet hearts, as each shared a brief snapshot into their life, and the person they were now in this world without.

We talk about being kinder to one another, and of course this is a good plan… We have no idea where another has walked, trudged, wheeled, crawled.. or perhaps laid..

There is no judgment , just quiet acceptance that these fellow humans are in the life group of learning to live a new life that includes their grief every day.

Life is changed, there is no escaping this..

Cling to people who share in your grief, allow them to comfort you… it really does help.. Learning to live with a broken heart can be achieved…but it takes friends and family and community to do it.

I also attended a “ divorce care” workshop a few years ago. It was good.. I didn’t complete it though.. so it might be good to go back and revisit this gathering. Caring for yourself is one of the best ways I have found to honor your loved one who has passed. Taking the time to listen to yourself.

I had heard this phrase a few years back, and heard it again the other day..”do the next thing.” It seems so simple.. simple is good.. simple is also complex.

Another therapist added to this phrase,

“ do the next thing.. the feelings will follow.”

He explained that if we are to wait until we actually feel like doing something.. we may never “feel” like it… so sometimes we have to prod ourselves into the next uncomfortable thing.

Being uncomfortable is not unbearable.. it’s just uncomfortable.. that’s all..

I was just thinking recently.. when did I think that It was my right to be in a state of comfort? Once I can observe this thought, taking the next shaky step doesn’t feel as bad as I thought it would be…

Reaching out helps… it makes it known that you are not alone.. we are a community, and when you share your life and thoughts, your scars become less raw, you allow yourself to be seen.. it is better, than it was, when you kept it all inside and to yourself.

The littlest accomplishments seem monumental, but they are worth it.

Grief makes you tired… it saps your energy..boldly be kind and good to yourself.. When thoughts of your person float in, be with them.. cry.. remember… love them.. scream.. yell.. whatever releases your captured love out..

Even though ugly crying usually gives you swollen eyes and a red and shiny face, it acknowledges your loss…

“ Be where you are”

What does that even mean? I think it’s just occupy your space, have a cup of coffee, listen to a song, sing even, have a shower, have a bath, take a walk, pet your dog, love your cat, go swimming, paint a picture, read a book, write a book, hug your kid, break a dish, shout at the moon, light a candle, mow your lawn, wash your face, smile at a stranger, read your Bible, pray, celebrate their life with thanksgiving, eat a salad, eat a steak, drink wine from a box, or a chalice if you’ve got one.. watch a movie, cook a meal, eat ice cream… life goes on…