Panic, small child panic. The only way it fades is to give my heart over to grace, surrender all and sleep. This is my prescription for a hurting heart. Fear is my enemy and yet it reminds me again of my purpose, my plight. It makes me realize that this is the condition of being human; we lapse back into the business of life and we forget, is it a fault or a necessary facet of survival?
But I cannot sleep. I am sitting on a hard plastic chair in a sterile room.
I do not like to feel vulnerable. I do not have the coping skills for it. Vulnerable on some level equals harm. Why is this? Vulnerable makes me want to tuck in my wings and go home. I do not want her to be in this room, she has to come home with us today healthy. I want to cling to her fast and sure. The words Vulnerable and Her trigger something within that makes tears form, moistening my eyes. My heart feels swollen and inflamed, just short of anger.
My internal force wants to tuck her up and take this moment away quickly and without pain – does us no good its a pointless exercise of the mother. We are sitting in a waiting room.
He told us it has grown. The growth in her Brain has grown. He is going to see what is to be done. It’s not an area they would be interested in operating on, its too deep. Too deep. What does that even mean? I’ve been told I can be too deep. Too deep is a bad thing? Yes, isn’t great. What is it then? I had too deep and I was blind and had to learn how to walk again. I had too deep and I am here still waiting for Fred to work and keep me alive each day. I’ve seen what 160 staples in my head look like.
Something comes to mind after I look at my husband’s face. His face is ashen and has turned a sickly white transparent sheen very quickly. His lips have thinned and he looks at her, looks at me, looks at the ground.
I look at my beautiful daughter; Her faith is built on a rock, and her hearts desire will come to pass, under grace and in a miraculous way is what I think as I look at her beautiful big 17 year old eyes, too wise for one so young. Nothing can defeat God, therefore nothing can defeat her. God’s plans for her are built on a rock. What was hers in the beginning, is hers now and ever will be hers. We cannot lose anything which is born from love. She is not lost to me.
I am reminded by a passage I read recently by Florence Scovel Shinn that said
“ To believe in something enough that it cannot help but manifest is to know the power of faith. Just to imagine is not enough. You must back your imaginings with every ounce of courage, love and conviction your heart can muster. This is when you will truly find peace.” I then remember a little plaque I have someone gave me when I was in rehab recovering from brain surgery that said “Be taken up and thrown into the sea, and if you do not doubt in your heart, but believe that what you say will come to pass, it will be done for you”- Mark 11:22
Am I doing this now? Am I believing? Am I doing the right thing by her? How can I soothe her and him? These two parts of our whole are hurting in front of me. So I do what I am reminded of, I squeeze their hands and believe that no matter what he comes in and says- it iS GOING TO BE OK. We cannot be defeated. We are not alone, we are not vulnerable. All will be well. I back up my imaginings of what will come to pass- that no matter what he says we can handle it.
She sits in front of me, fighting back tears, and looks at us apologetically. I squeeze her hand and remind her its ok to cry and she responds in a way typical of our weird genetics (my sister and I both suffer from this) a nervous onset of giggles and a wiping of the tears, then a smile, sad but a smile. We sit there for 12 minutes knowing it has grown but as we all look at each other something is changing- we are remembering our resilience, remembering how toughened we have all become and mighty through this journey we have all been on together.
He enters the room and says that’s it all ok, he’s checked with the surgeons -the growth is within an acceptable range, unless there are any new symptoms they don’t need to see her again for twelve months. The growth could just be from two different people reading the scans or a different perspective. It’s a good outcome, don’t worry. Here are a list of her symptoms. One of them is- if she doesn’t wake up. A small amount of vomit hits the back of my throat. Like the tears, my body reabsorbs this unwanted fluid.
I fire questions at him like a Captain firing a semi automatic and he answers every one of them, some with surety, some nervously. He is a nice young man.
We try process on the way home, all of us with gusto; talking, teary, yelling, angry. Discussing accuracy, second opinions, what does this mean, that mean. How does she feel? Are we good? Yes we are good.
By the time we get home we are all exhausted. We are all relieved. She is ok. She’s going to be ok. She came home.
She does her homework.
I cook dinner, He takes out the rubbish and feeds the dogs. He hugs us all lots that night. He gives awesome hugs.
We return phone calls. How is she? She’s fine, all good for another 12 months. It cannot be explained ; this day that we have had. This confusing paradox of a day, of roses and leeches. How do we have the words when we have not yet fully processed it ourselves?
When I go to bed I close my eyes and give thanks for my family’s faith, it continually gets us through these times in tact. I am revealing so much here in this pondering it scares me, I am being vulnerable because there might be one of you out there that can understand, can feel it too and know that its going to be ok. For some reason this is why I write.
This is a message in a bottle.
This sense of faith my little tribe has is like a well of spring water in a desert. We draw from it what we need, it gives us reflection, tools and peace. I lay there and picture in my mind a big bubble made up of every color of the rainbow and inside are epic particle of feelings of peace, grace and calm and I send it out to the world asking for it go to every parent and child who is unwell.
We are on the road less travelled, but we are on it together.
Blessings to you and yours.