Your midline shift, our lifetime shift

Your world, my world, our world,
Shaken beyond, into another realm,
Twisted, mutilated, beyond recognition.
Isolated from humanity, contained in shock.
Reluctantly your grip loosens, as you begin your sleep.

We see the man, so strong, so you.
External appearance, full of deception.
We crave to turn back time, we bargain,
Some pray for life, some pray for death.
A chemically induced sleep.

Your sleep, the deepest coma provides
Your siesta from reality, from the foreign life awaiting.
Your body wasting, brain bleeding, cascading;
We give you permission to let go.
And yet you continue to sleep.

My love, my world,
Your body, your soul.
Unwillingly handed you over to strangers.
I am powerless, raw, emotionally raped.
As you continue to sleep.

The lives of your loved ones on hold,
Gathered into the foreign room,
Hurled into the capsule of denial, seeking protection,
Disbelief, numbness floods; engulfing, shielding.
And yet you sleep.

We wash, we massage, we gently whisper,
We fill the air with music, aromatherapy,
Surround your room with pictures.
Love and positivity we infuse,
Attempts at protection as you continue to sleep.

Pressure rises, burr holes drilled,
Skull removed, clots suctioned,
Cerebral dissection, no time for reflection.
Shock keeps me calm, clinical, removed.
Multiple medications, so you continue to sleep.

The weeping, the grieving,
The anger, the horror, the adrenaline,
The peaks, the troughs,
The destruction of what we thought we knew.
And yet you sleep.

We are stripped of power,
Disrobed, the decision to fulfil your wishes no longer ours,
Left naked, choice removed.
Maintaining your dignity becomes unreachable –
I unwittingly fail you, as you continue to sleep.

Suctioning lungs, thick creamy mucus,
Fever, heart rate, BP outrageously high,
Sepsis flows through your veins,
Faecal content as vomit spills.
Yellowed by jaundice, I puzzle how you continue to sleep.

Lives shattered, tears spill,
Tempers fly, sorrow fills,
Children grow, time flows,
All marked by the click of the respirator.
As you continue to sleep.

The reality of your prognosis,
They continue stubbornly to deny.
The wish for miracles unleashes my anger –
Surreal that some can avoid the certainty.
I pray – you continue to sleep.

I fear the future,
I seek and cherish the past.
In numbness, I wade through the present,
I weep for lost opportunity, words unspoken.
As you sleep, do you dream?

My love, do you feel the fear?
I wonder about the scars inflicted upon the psyche,
Physical, emotional trauma, remoulding who you were.
Through ‘life saving’ treatment forced upon you,
You fight for life, as you continue to sleep.

My life is full of fear, the future unfathomable,
Your well-being my focus, my obsession.
My life on hold, an unconditional pledge,
Until/when/if the rhythm of your new world steadies.
Do nightmares reign, while you are sleeping?

Undeniable change awaits all who say they “love you”.
The majority will walk away others will run,
A few new friendships cemented, through passion and struggle.
Your midline shift becomes our lifetime shift.
I will never truly sleep while you are sleeping. Read more!

A great December day...

Well, 2009 was another full-on year for Alison and Kev, and one of the consequences has been that it has been hard to keep up with updating Kev's blog. Kev is in hospital in Perth just now, as he had suspected hydrocephalus, but other diagnoses have been made, and Alison will fill everyone in on that soon. In the meantime, here's a piece she wrote mid December about a great day that Kevin had.

'Kevin remains incredibly sleepy, he slept in his recliner from 2 am to 10 am then I transferred him back to bed. Needing to ensure he has no pressure areas and assisting him with food and fluids. Everything is an effort.The doctor’s letter came today confirming the enlarged ventricles and therefore the hydrocephalus; no wonder he feels so bad, to the stage that I am even having to ensure he is turned regularly.

Kev finally got up around 1.30 pm and was in and out to the car. He is wetting himself again, and that in itself tells me things are not good. I did manage to shower him, with lots of resistance, but it was great to get him cleaned up and his hair washed; Paula cut it the other night with her clippers (she is such a wonderful support/companion for Kev and me!!).

Anyhow, this sleepiness had a short interlude in the form of a drive with Tali and then he went back to bed, feeling exhausted.

He got up on his own accord at 6.30 pm and sat on the couch with me and ate his dinner, then was back out to the car. It is difficult for him to walk as much now as he is weaker and has been doing lots of crawling and using the wheelchair when needed. We went to the Dome at his request and he indicated that he wanted a drink and a snack. He was unable to clearly express if he wanted a hot or cold drink, but he really enjoyed some apple pie and a coffee.

I asked him if he would like to visit John, and he was okay about this. As soon as we got there he opened the car door and went into the front lounge – John had the music pumped right up, with Pink Floyd wailing in the air in the driveway and down the street!!

I thought this would be too much stimulation for Kev and that the noise would blow him away, but in he went and John asked him if he would like to watch Pink Floyd on the his new big TV. Well, to my surprise Kev went and sat on the recliner. John turned the music down and Kev eventually indicated for John to turn it back up!! Kev gave us the thumbs up several times to indicate how much he was enjoying himself and he stayed for an hour and a half.

My point is that the brain is so amazing, as is Kev's stamina. He is feeling like crap most the time, but he can put in the hard yards and push himself to get some enjoyment from life.

For me it was lovely to see an almost 'normal' situation with Kev relaxing and really taking in the music.

However, what touched my heart the most was that when we left, Kev embraced John in a long hug and got out the words “Love you Bro”.'
Read more!

Small steps and giant leaps

Kev took some real steps forward, both literally and figuratively, in December and January. However, for every photo we have of him on the move, he spends many, many, many hours sleeping both beforehand and afterwards. One day he slept for 20 hours of the 24!!

I feel so frustrated at times as we have a lot of equipment here to help with his rehab, but both his lack of energy and probably a lack of motivation hold him back.

We have found that the best incentive for him is the stimulation of having family and friends around; sadly, however, we just can’t get enough of it. For example, when Kev's dad was here, Kev was coming to the table for meals with us, was getting up regularly in the mornings and was participating in far more activities. Click here to see recent photos that demonstrate what he is really capable of.

Your input, not matter how small you might think it is, can be of enormous value. So please help us in any way that you can think of – please don’t be one of the many who think that ‘others’ are doing it!

We are currently looking seriously at the possibilities for therapies outside of Western Australia, with hyperbaric oxygen therapy (HBOT), neuro-feedback and intensive physio being the preferred choices among those that we have researched. Read more!

A weekend away

It was with an iron heart and gritted teeth that the last-minute decision to take Kev away for the weekend was made! This offer was generously suggested and funded by Carers Respite. Well, what a great decision!

Four hours after a lovely meal (in the ‘romantic’ setting of the ute), I finally convinced Kev to come inside the unit. He consented with an “Oh, OK.”

Well, there we were nestled in bed at 9.30 – oh, for an early night!! Well, that lasted a good 5 mins before Kev decided he was far too excited and was up and off for an adventure! (How did I miss the fact that we were so close to a full moon????) So the wheeling and strolling began, along the many paths under the peppie trees, along the beachfront. Kev pushed himself determinedly up the slopes, and chuckled with delight as he gathered speed, navigating with precision down the other sides. Great fun for Kev and would have been for me too, but after being up for 18 hours it just didn’t have the same sparkle!!
So finally back off to bed, with Kev getting his back rubbed. I dozed off, but woke with a start to find Kev was halfway out the back door again!! If you can’t beat ’em join ’em, so off we went again, this time in the opposite direction, to explore the grounds of the resort. Well, all this is excitement was just too much for poor Kev, who developed a belly ache and ended up in the shower, which was not too user-friendly for him; so there I was helping him to shower and propping him up with my right shoulder, while he hung on to the slippery vertical hand rail for grim death. Once this ordeal was over Kev just cracked up laughing and gestured with his hands “whatever”. Humour is such a great thing!! We both had a bit of a laugh then got back to bed, but then he was up again for a spot of TV and rice snacks!!!! His speech blew me away as he asked how long we would stay, and where we were. We both finally both crashed at 2.30 am.

I was woken at 7 am by Kev, who was in great spirits, sitting up in bed and turning the clock radio on for some music!! I made a cuppa for us both and heard Kev yell out “Come on!!” I did a double-take when I got to the bathroom – there he was, standing, holding onto the vertical handrail, wanting the shower on and ready to freshen up for the day!

We went for a long walk through the grounds before Kev asked a passer-by for directions to the cafe for brunch. Prompt service was available, which was just as well as Kev’s window period for waiting is pretty minute! Scrambled eggs, toast and a coffee, then Kev was off independently to the car, while Paula, who had just arrived, and I caught up.

We had a really nice day, with a drive around to Meelup, Bunker Bay and around Eagle Bay, with great scenery of crystal clear waters and Kev steering the car for short times and doing far better than I could from the driver’s seat. Some lovely people took the time to chat to Kev, and this gave him enough of a boost to get out of the car and go shopping in Dunsborough. We browsed around and he was happy to look in the pet shop, and then with only a little assistance he got some cash out from the ATM!! We went for a late lunch and Kev ordered by pointing at the menu; he then got his money out of his pocket to pay and grabbed a number for our table with no prompting. We really enjoyed this outing, as the cafe was one that was a fave in the past. Back at the unit, Kev enjoyed a good snooze.

Pete and Carol arrived for the evening. Kev was very chatty and led us on an enjoyable, long walk along the beach front around to the road at dusk. Kev really loved chatting with many people and even befriended a couple of dogs on the way. He showed great verbal skills with obvious concentration, after a bit of a tune on the guitar in the evening and a long drive with Pete for some ‘bro time’.
Kev was keen on another midnight walk, but this time I managed to persuade him into bed and literally had to drag him out the next morning at 11 am.

I am so glad we went away together. The moral of the story is: “A change is good, but not always a rest!!” (lol) It was so great for Kev to get this stimulation. As we say here in Oz: “Life. Be in it!!”

For more photos of this weekend, click here. Read more!

Ready to go...!

For any visitors here who are in any doubt of Kevin's current abilities and potential (and for those of you who are just interested to see how well he is doing), here is a great video taken in November that demonstrates his dexterity and fine motor control. Once again, why is he not being provided with basic therapies by the State?

Take careful note that what Kevin does here is without any assistance, without any hesitation, and expertly performed without any errors, including selecting the correct items in the correct sequence.

I couldn't do it any better myself!

Read more!