The Surreal World…

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So after 5 months of waiting for this day to come, the week up to his surgery arrives. I think family and friends expect me to be a blubbering mess, after all, my 5 month old baby boy is having skull reconstruction. But I will not let myself fail him. He sees his mum every day with a smile and a tickle, how should he feel if I look at him in despair and negativity, what if, can this happen, how will I cope, can we get through this. No. He needs faith and positivity and love and play, he needs my strength and courage so that he can be strong and brave also. It makes me a little sad he doesn’t know what is coming, but I am grateful he won’t remember.

We booked into Turner ward this morning after being transported by our lovely Salvation Army worker Deb. The hospital is cold and smells like all hospitals. Spencer was weighed; I am a little concerned he has not put on much weight. He is also still a little wheezy; I hope that doesn’t challenge the surgery. The cosmetic surgeon assistant has been and explained that there are always risks. As he has to be on a ventilator his lungs collapse a little after he comes out of surgery, there is a good chance of a blood transfusion; on fact I read 50% of patients require blood transfusions. I tell Rod this and I think now I should not have. He asks what we will do if we lose him. Not sure what to say to that only that I know we won’t, he will be around a while to torment us. I pray I am right. I can’t think of loss, it’s not possible in my world now, not ever. We just have to remain resilient to bad thoughts and hope the surgery goes as planned by the surgeons.

Deep down I still can’t really believe this is happening. I look at some pics of a Pfeiffer baby overseas who has had the same op, her head is so swollen and her eyes closed tight after the surgery, it’s really hard to look at, poppy has come into our lives only for her condition, she is beautiful and precious and the beat in her mummy’s heart and the friend of her seemingly wise brother. A few days later her mum Noelle post pics of a happy little poppy. It’s so good to see an idea of what we will be faced with. It hard to accept it will not be the end of all surgery’s… merely the beginning.

I am not sure what has been found inside of me but I remain focused and unscathed… Friday comes however I am not sure. Rod will be back and that automatically puts a force of strength into my blood again. I hope my lack of emotion is because I want to stay together, I fear if I lose it now I may not get out. Big breath, quiet reminders and I will tackle each and every day.

In a blink of an eye my son we are here again,

With a little kiss and a hush we are waiting,

Smile and growl like you do

Look at me as I do you

Together we snuggle and together we play

Pretend we don’t belong here

its just like any other day…

xxx

The day hasn’t gone too bad.We took a little walk down to the chemist to buy Spencer his teddy. Something I do everytime he is here… Lets hope the collection doesnt get too big. The doctors have arranged for a sleep study for Soencer tonight. Its important to know his sleep pattern for surgery friday. How much oxygen he breaths in and how much carbon dioxide he breath out. In the morning he has a blood sample to see how much carbon minoxide is remaining in his blood. I will find out soon the results. It all a waiting game in here.

I fell ill last night looking at Spence. His head has to be cut from ear to ear, his skull broken and then put back together… How the hell do mothers cope with this. The swelling, the sadness and pain, the recovery. I will find out soon enough. Til then I have to remain focused and just sit with whats happening now.

His sleep study went well. He slept..so thats a start. His little nose tormented him most of the night though, his stats remained normal I couldnt understand the other part as yet. Waiting for docs to come and let me know, that will be interesting… So tell me “Obstructive Sleep Apnea” most likely, adding to the list.

A group of doctors came in and inspected Spencer last night. They had to figure his diagnosis. They didnt… I felt a little sad though. They guessed either Apert or Crouzon. Apert is what the peadiatrician suggested in Dubbo. So to his respect I can now see how he come to that conclusion.

We had deafness clinic today. I was reminded Spencer has Permanent Conductive Hearing loss… Permanent… Rod and I where so sure that he would have hearing aids just until he learned to speak and then take them out. But no… He will have them all his life. I hope in the future they will invent something that will make aids less noticable. But again we are grateful that its not profound hearing loss. He is not deaf just needs the volume turned up.

The sleep study team came and seen us. He has some sleep issues that will requiore CPAP to fix and help him sleep better at night. So we are given instructions and we give it a go…

Yes well not that simple. I tried after he fell asleep to put his CPAP mask on and he hated it. I dont blame him it was to him something clinging to his face and blowing air into it. He hates even walking from the car to the house and there is a bit of wind. I give up. The nurse comes in and we try again. Again he wake. Stuff the CPAP for now.

Thursday comes and a friend visits from Newcastle to ease some of the pressure I feel, we talk and drink coffee, she asks the right questions and is a comfort for me. I thank her for such a big trip to meet our son, putting a real face to a name helps my friends to understand his condition. But allows me to adjust better everyday. Thankyou for my real friends. xxx

Thursday night: my heart feels so heavy as I sit with the night light on in the ward. Accross the room is a little girl called Shaunia, I recall meeting this little girl in May when Spencer had Rhino Virus and we flew fom Dubbo here. Its funny again such a big hospital and we share a ward room. She suffers from some rare condition that will keep her in hospital most of her life. But she is a treasure with such personality and importance. I call her the “Queen” this is her ward and the nurses dote around her. She is beautiful and with such character considering her trach in her throat and constant monitoring. I am in awe by this little girl, raised by nurses and doctors, her parents coming when they want, bossy the nurses around, demanding this and that and then walking oput, leaving their little girl in the hands of strangers. But they are not such strangers to Shaunia, she knows each nurse as their shift ends.

Its a peaceful night as I curl up onto the small lounge chair they give parents to sleep on. I dont fold mine out to the bed, figure I wont be in it long enough to get comfy anyhow. Its all been such a daze this past 5 months. Illness and ambulance trips, hospital stays and aircraft flights, antibiotics and nose sparys, suction and coughing attacks, needles and blood tests, late nights and early morning sometimes 24 hour shifts sometimes 48 hours.

I have swollen ankles and tight calves, stomach ulcers and headaches, bleeding nose, chest pains, dehydration and sleep deprivation. My life has been screwed inside out and upside down. I have travelled kilometres and gone no where. Eaten nothing for days and living for every moment closer to tomorrow… Surgery Day.

I felt like it would never come. But it has… It is nearly here… And I cry into the pillow… I have to find the last bit of strength to hang onto myself, to my heart and to be strong for my boy… 5 months old and having a skull reconstruction. Like he hasnt been through enough these past months. I stop almost as quickly as I start crying, not yet, dont let go yet Dana.

“Do not apologize for crying. Without this emotion, we are only robots.” Elizabeth Gilbert

I brought children into this dark world because it needed the light that only a
child can bring. ~Liz Armbruster

I dread the questions I will be asked

I dread the fear of presumptions

I dread the torment

I dread the curious glances

I dread the whispering mouths

I dread the cruelty

I dread not knowing

I dread those not caring

I dread the nasty

I dread my reaction…

xxx

Spencer is my fourth beautiful and brave child to enter this big bright world of neverending. I accept his presence and like my other children love and adore his existance. Amen.

My first facebook post a week after Spencer’s birth:

Spencer James Blackhall. 10.2.12 8pound 1ounce. Thankyou for yr best wishes. spencer entered the world not without dramas and we have spent the first week of his life at Westmead Childrens Hospital. our concerns for our little man are not over but kept within our immediate family to ensure the most normal life for spencer, dayne. madie josh and us. we hope to head home today but would like for you to understand we have to keep our man healthy to tackle the future requirments for his health. we pass on yr love but prefer no visitors at this stage. thankyou for understanding. we have been thru hell. he has made us realise how fragile life is and to appreciate every moment. thank god everyday for yr kids and their little lives.
I was scared… I should of posted his birth when it happened but I didnt know if I would also have to post his death.
The thought grips every part of me then… Now. I had three children without drama or problems, people where waiting for confirmation of a baby and I was waiting for confirmation of health. I lacked gratitude to the world, people would be shocked and in disarray, what would they say? My fault? Rods fault? How could I explain what was happening when I didnt know. I didnt want visitors to sticky beak, to be shocked by Spencers eyes, to ask questions I didnt want to answer, I felt let down by god, by my body and by the whole friggen world. No ones sincerity or sympathy was welcome, how did I know if they meant it? What would they say behind my back… Small town…Big mouths…. Friends here are rare. So many things rattled my brain, was I being stupid? Over reacting? Glum? This was so unfair.
So I pre warned everyone. No visitors meant KEEP AWAY…
I dont want you to judge my son.
“How would your life be different if…You stopped making negative judgmental assumptions about people you encounter? Let today be the day…You look for the good in everyone you meet and respect their journey.”
Steve Maraboli

We where confronted with a number of surgeons who told us Spencer will need an operation on his head. Lifes funny, this information didnt quiet sink in to us, we just accepted in and seemed to continue in a fantasy world we had created since his birth, it has a high power of taking over in moments of misunderstanding and denial.

We left Westmead hospital non the wiser. I worried about the trip home and was concerned about making life again. We had only just hit the outskirts of Sydney when I began to silently read his discharge papers. I thought his diagnosis was something like Cruiz or Cruizon (thats how I thought it was spelt then), but I read:

Craniosynostosis Proptosis.

A little confused, I put the paper back in my bag without talking to Rod about it. I think he was sure of never returning to Westmead and Spencer would overcome anything he was diagnosied with at home, I didnt want to bust his bubble and take that away from him… Something I became good at.. keeping it all inside to prevent anyone elses pain erupting. The pain was all mine to deal with, the questions mine to contemplate, the fear mine to walk with everyday.

I was told by my social worker: who has since forgotten us, not to google anything because it usually shows worst case scenarios. I didnt listen: it is for my googling I battled through severe sadness and trudged a road of absolute terror. Through googling I broke my heart and fought dispair, through googling I become knowledgable and stronger. It is through googling I realised regardless of his condition and what he may look like, he was

SPENCER JAMES BLACKHALL…

And no one else.

While we try to teach our children all about life,
Our children teach us what
life is all about.~Angela Schwindt

FROM MY PERSONAL DIARY:

Saturday 17th FEBRUARY 2012: We are booked into cranial facial clinic for 23rd March, 5 weeks to go. He also has to have another hearing test and eye examination, Rod says we will know this fella inside and out. I am just so relieved his heart and brain are ok. God really answered my prayers. We left Westmead today at 7am. Spencer fit snuggly into his car seat and we headed to Rod folks house. Spencer must of enjoyed his trip, sleeping the whole way home. I got him out of his seat when we got to the front gate, in preparation for the ferals who I was aching to see. As we got closer to the house they all came running out to see their new little brother they had waited a week for. When I lifter Spencer up to the window Joshua’s eyes lit up he was so excited, he told me later he nearly fell over he was that happy. Just the response I looked for. Rod and I looked at each other. Our little family back together again. A special quick moment.

Children make your life important. ~Erma Bombeck

Spencer loved his cuddles. I cant imagine the releif Rod’s mum felt when we were finally out of the hospital, the week would have been long and anxious. Even though we smiled, I could feel tension of the unknown lingering. The kids where so oblivious to the pain Rod and I had endured. My mum and dad turned up that afternoon, I knew mum would crack once she saw me so I breathed deep and put on a brave face to save her any discomfort. This point in her life has been difficult and I didnt want her to think she had to be braver than me, because she couldnt, that was hard enough for her. Spencer slept well. I sit up late at night looking at him still wondering, questioning. Its in your hands god.

19th February 2012: We are woken with worry today. Spencer become sniffly and the concern must of shown on my face because Rod started to panic. We dont discuss it too much, he settles and we headed for home. I sit next to him, hoping he sleeps all the way home. He looks beautiful and calm, travelling carefree all the way . I had waited for this moment for a long time and shed a private tear when I finally place him in his bassinette, he stays asleep, confirmation he loves being home. If only it was forever, never to another hospital cot, I am so releived he is home now. Rod has a celebration beer with a friend and Spencer settles in to home life. I think it will be a while before I can have a drink.

20th FEBRUARY 2012: Rod started work late today, so he helps get kids off to school. comes around today, her emotion towards Spencer is confusing and really catch me unguarded. I am a grieving mum and her straighforward attitude takes my breath away. I suck back emotionsher sadness towards him is not what I needed or expected and I felt really crappy when she left.

Her words echo in my mind and half the reason I dont take Spencer anywhere.

“You realise you will have to warn your friends about Spencer”

I think she was preparing me for the shock my friends would have felt when they seen Spencer.

“A friend is one that knows you as you are, understands where you have been, accepts what you have become, and still, gently allows you to grow.” ― William Shakespeare

My good friend for many years and for many more came to my home a week later. She has a presence about her that makes us smile. She has been through many situations in my life and that of my families, she has respect for my husband and a humour we love to accentuate. I trust her opinion and her honest love for my family. Lisa came around. With a smile and the usual laugh she spoke to Spencer with an open emotion. She did not judge nor do I think was she shocked, this was her friends child and that was important to her. She held Spencer as if he was her own, kissed his little face and asked me how I was. That was all I needed. She will always be a special person in our lives because I didnt need to warn her, because I didnt need to explain, I didnt need to deny his condition or hope her reaction was satisfactory. She simply treated Spencer as one of the Blackhall family, for that I love her deeply. xxx

21st FEBRUARY 2012: I look at Spencer all the time and I know deep down he will look different forever. I remind myself though his brain will functionand he will know how much we love him. Rod and I consider looking up Cranial Facial Syndrome on the net, but we choose not to just yet. I just want the surgeons to fix his skull, I want it over with already. I am concerned about his hearing and try to hide my emotions from Rod, I am worried he will not get close to Spencer because he thinks these problems cant be fixed. We had another panic with his snuffling, Rod gets so worried and I again pretend its not a worry to me, praying he settles. I cant feel sorry for myself anymore, he is a gift.

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