One year today


My precious child

Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…

If feels as if a lifetime of sorrow has passed since you stopped breathing.  If feels as if it has been a lifetime since I held you in my arms.  It feels as if I have cried an ocean of tears.

In the past year I have aged.  I have gained weight. I have existed. A year ago my life ended.  The boys and I still burn candles for you.

I am still filled with rage.  I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity.  I know that you would more than likely have died before me but perhaps with less suffering?

I will always miss you.  I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.

Today I want to thank you for my beautiful grandsons.  Thank you for remaining my little girl through-out your life.  Thank you for fighting for so long.  You were such a warrior!

I thank God that you came home to die.  I thank God that I had the privilege of caring for you.  I thank God that He entrusted me with something as pure and precious as you.

I am grateful that you are no longer fracturing vertebrae from vomiting.  As much as I miss your laugh I do not miss your pain filled tears.  I am grateful precious baby that your suffering is over.

I miss your company.  I miss our late night chats, drinking untold cups of tea/coffee.  I miss your text messages, your telephone calls, your shuffling footsteps down the passage…  the smell of smoke alerting me that you are awake and sitting on your step…

I miss the boys laughter.  I miss the joy that you brought into our lives.

We will continue to honour your memory – every day of our lives.  Your legacy will live on in each and every person that is allowed to live until they die with dignity.

I love you Angel Child with every fiber in my body.

Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…

I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…

Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…

Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…

look and don't touch_edited vicbaby Vic 5 years old100_7453 (2)Image (184) Image (191) Image (193) Image (214) Image (220)

Tomorrow may be better than yesterday


Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485
Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating.  Last night the nausea was absolutely relentless.  With no food in her stomach Vic vomited blood.  Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night.  I cried and slept in her bed with her.

 

Today Sr Siza tried to put up an IV drip.  Vic has absolutely no veins left that are suitable for a drip.  The sub-cutaneous driver is back up.  At this stage of the game the risk of cellulitis is less than the need for pain and symptom control.  We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron.  “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.”  http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital.  Vic refused.

On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating.  It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.