How's Sweet Chloe doing?
Here I am in the beautiful new sweater my Great Grammy
knit for me
"Thanks Great Grammy - I love you"
So much has happened since then...good...bad...happy...and
sad. I guess I'll start from April 15th as this was the first
time I think I truly believed that I could lose my darling sweet
girl any time. I don't always see it but on this day I did.
Chloe had woken with a terrible cough, a raspy breath and a bit of
a fever and she wasn't able to keep her food down. Unfortunately we ended
up in the emergency room where an x-ray was performed and it showed that
Chloe was in the early stages of pneumonia. We had always been so
thankful that Chloe, although having Krabbe's, had been very healthy otherwise
- never a cold, flu or any type of infection and she has always had the
most beautiful pink skin, the silkiest hair you've ever touched and the
most brilliant sparkling eyes.
Ohhh how my heart ached, I wasn't ready...all I kept
telling myself was "not now", "all I need is a little more time",
"just one more precious day", "please please don't take her now"...I
kept asking God if there was a miracle awaiting us? "Please
give me a sign, anything."
My dear husband kept trying to tell me that no time
is going to be the right time and it will never be enough time, I
will always want one more moment, one more day. Although I
know he is right it is so hard for me to think of letting go. Everyone
keeps telling me how strong I am but you know, I don't think I am.
I will never be strong enough to let my precious baby go.
Through my life I haven't been a religious person,
by that I mean we have never attended church on a regular basis,
but I do believe that I am a very spiritual person. I have a
strong faith in the power of LOVE, of family, of friendship and in
the beauty of life. But since Chloe blessed me
with her miracle I have a stronger belief and faith than ever before.
I am so consumed by the amazing power of LOVE, it consumes my
every being, I love my darling Chloe more than I can ever express through
words either written or spoken.
Well the last month and a half since Chloe's pneumonia scare has
been pretty good. Chloe seems to have moved into a new stage
of the disease. Good? Bad? Well, she is definitely soooo much
more relaxed and content. She no longer seems bothered as much
by other people being around. In the past she has been very upset
and irritable any time her mommy & daddy had visitors over, but
now she seems okay with it. Which is fantastic because now our
family & friends get a chance to enjoy our darling girl and get close
to her again. This is so wonderful, it brings tears to my eyes to
even think about it. But with this also brings sadness because we
are wondering if it means that she was in a great deal of pain before and
that she should have been on more medication to ease her discomfort??
Or has the Krabbe's progressed, meaning that we have less time
with our beautiful girl?? Never mind...take it for what it is,
enjoy each precious moment and just know that we are doing the best we
can and most importantly we are enjoying every amazing moment and we are
cuddling Chloe with soooo much LOVE.
What's been happening lately with our Darling Girl?
On Saturday, June 8th you woke up at 5:00am very very congested
and you began to cough and you vomitted your last feed. I wasn't
overly concerned only because you have been known to vomit maybe once
every 2-3 weeks. But it is unusual for you to wake up and vomit
in the morning like that. You seemed to have a lot more secretions
than usual. You would go through the day being a lot more irritable
than usual and you would vomit each feed you were given and then your
temperature began to rise. Ohhhh my poor sweet girl, what is going
on? This is very unusual for you. At 11:00pm that night your
temperature would go up to 104 F - Oh my God, what is wrong - this can't
be good. Is it time?? I am not ready for this. No, I
can't possibly lose you now. You were doing so well, you had been
so relaxed and content these past few weeks. We had even gone ahead
and booked our trip to Buffalo for the Hunter's Hope Medical Research &
Family Symposium because you were doing so well. What is happening??
Have I been living in denial? You have certainly brought me
back to reality my darling girl.
At midnight I called the pediatrician and in a non-comforting,
matter-of-fact way he said "No, don't bother taking her to emergency,
it sounds like she has the flu, just give her a gravol suppository and
she should be feeling better." -- That's it!!!!!!!! That's
all he had to say!!!!! I'm afraid I'm losing my precious baby and
that I have only minutes left with her and he tells me to find a pharmacy
that is open at midnight so that I can buy a gravol suppository - Gee thank
you for your infinite wisdom and compassion.
Once again, my most beautiful darling there seems to be no where
to go. Thank goodness I have been blessed to love you and care for you.
No one in this world could ever ever give you the LOVE that you
so deserve. You deserve so much better than this my amazing, most
beautiful angel. So the next day is when a guardian angel entered
my life and put me in touch with a hidden treasure in the city called "Canuck
Place". Oh my goodness, you have no idea how much I needed to find
this little haven tucked away with love where I had no idea it even existed.
Canuck Place is a hospice care facility for children that provides
loving comfort and palliative care for children with progressive life-threatening
illnesses. We arrived at Canuck Place on Monday, June 10th and my
life will never be the same again. You absolutely have to read about
our lovely stay at Canuck Place. For the first time, my daughter was
seen for the darling little soul she is. My darling girl, you received
the most incredible care the whole week while you & I shared a beautiful
room together. It is nothing like a hospital, it is a beautiful amazing
heritage home where the doctors and nurses are dressed in plain clothes (no
scrubs) and they sit with families over coffee in the comfort of big over-stuffed
chairs in the rooms and they LISTEN. They really listen.
My darling sweet girl, it turns out that you have another respiratory
infection which has hit you a little bit harder than the last time.
You were immediately given antibiotics. Then we sat and discussed
everything, the doctor wanted to know everything about you, there was
no rush and this dear sweet man even went and read your website. Oh
my sweet darling I am crying so much, they are tears of joy that you are
finally being cared for by the medical community. If only we had
stumbled upon Canuck Place earlier on. Oh well, we are blessed with
the moment we have been given and now that I have found this place it will
remain in my heart forever. They have finally addressed your pain issue
and the spinal discomfort you have suffered with for so long. The physician
was surprised to hear that you had never been prescribed pain medication.
Well you were immediately provided comfort and I can't believe how
relaxed and how content your sweet little face is my sweetie. Oh how
long it has been since I could move you without seeing your darling face contort
with pain. Thank you Dr. MacLean - thank you from the bottom of my
heart for your compassion and for caring about our precious Chloe.
Canuck Place Children's Hospice - A Piece of Heaven Hidden
in the City
To hear about Chloe
& Mommy's latest excursion to a place that seems to be blessed with
a bit of Heaven - please click below as Chloe & Mommy have so much
to say about this most special of places hidden lovingly & gently away
from the hustle & bustle of the city...(click on pooh & piglet)
Love
& Kisses Always xxxxoooxxx
Click on the Heart to Continue...