| |
Elora, Ontario Canada
 Tyler
Ray Biffis was born after an uneventful labour on 29 July 2004. Three hours
after his birth, we were stopping at Tim Horton’s for lunch with our new
baby and my sister in law Darlene. Tyler had still not opened his eyes or
eaten, but the midwives would be at our home to check him at noon the next
day. We weren’t worried at all. It was only later that I wondered if there
was something wrong. I stayed awake all night watching him. He tried to eat
but could not latch. Our daughter Kira had nursed right away so I felt a bit
nervous.
The bottom fell out of our world the next day around noon. Our midwife,
Leslie, arranged to have us take Tyler to the hospital in Guelph to have him
checked by the paediatrician on duty. The doctor said something about a
syndrome, but nothing more because he could not be sure. He wanted to send
Tyler to McMaster to be checked. I felt our world crumble. A team came to
pick him up and take him to Hamilton. I swear I felt my heart break. We
drove to Hamilton in a daze. I remember the first doctor we talked to giving
us the news that our son had no eyes. We were so shocked that we did not
react. As it turns out that was the least of our concerns. We left the
hospital to get some food at a plaza across the road. I felt as if I had
moved from reality to a new realm. Everything moved slowly and in a surreal
way. It just could not be real. My beautiful new baby boy was in NICU.
 The
first four weeks of Tyler’s life were a roller coaster. Initially, his blood
sugar could not be stabilized. He went through congestive heart failure,
reflux and aspiration problems. We chose to have a g tube placed so Tyler
could get enough to eat safely. Tyler was found to have two fairly large
vsds and a small asd. We were told that surgery could correct his heart
defects. Doctors had told us that our son likely had something called
Fraser’s syndrome. They wanted to do genetic testing to eliminate trisomy
13. It was felt that Tyler did not have trisomy as he was doing very well
and his presentation was more consistent with Fraser’s. When Tyler’s genetic
testing came back, things went from bad to worse. He did in fact have
trisomy 13 in 96% of his cells. I had never felt so alone and helpless in my
life. Tyler remained at McMaster for another 2 weeks before being
transferred to Kitchener, closer to our home. While at McMaster, we met so
many wonderful nurses and social workers, I can’t imagine how we would have
managed without them. Tyler’s primary and secondary nurses were awesome.
They would call in on their days off to check on him. It was a great comfort
to us knowing he was being looked after by people who truly cared about him.
Tyler was transferred and two weeks later, he came home. We had 5 weeks with
our son at home. They were the most challenging weeks of our lives. Between
feedings, pump problems, heart meds and care, looking after Tyler was a full
time job. He slept well during the day but cried all night. As there was not
any nursing care available in our area, we were very sleep deprived. Tyler’s
time at home was difficult, but we would not trade that time for the world.
Our little boy was at home where he belonged. He spent five weeks being
loved, held and adored. We could not keep Kira away from him. He was
smothered with kisses and hugs.
On 28 November, we had been concerned that Tyler had a cold. We were
monitoring his condition carefully and were in contact with his community
nurse. After his 1 a.m. feed, we fell asleep. I awoke around 3:30 a.m.
realizing that Tyler had not woken up for his usual diaper change. Darrell
got up to check him and Tyler was gone. He had gone quietly in his sleep. We
will be forever grateful that he left peacefully.
 Often when I reflect on the seeming cruelty of life, I think
of the pain and discomfort our son suffered. I am learning that the gift he
gave to me and anyone he met was to transcend the surface and live life to
the fullest in every way. Just after Tyler died, I found a plaque in a mall
store which I would never normally even go into, not my type of stuff. I
found a coaster that said “Love like you’ll never get Hurt’”. I felt very
strongly that this was something I needed to have. I bought it and realized
that was what Tyler wanted- he wanted to teach those lucky enough to meet
him that life is love. It is really that simple.
Now the struggle becomes taking what we have learned and living it. To learn
to take the pain and grow from it. Our loss is excruciatingly painful but it
has shown me the beauty of the peaceful moments They are there if you choose
to see them. The supreme gift is that of living in the moment. I now have
the ability to live in the “here and now” and I live those beautiful rewards
with my daughter Kira. I am learning to live them with my husband. To let go
and be there for him, not try to choose his path. Letting go is obtaining
freedom
Tyler gave us a whole new world of virtual yet very real friends. To
everyone who has touched our lives and to those who Tyler touched, a
heartfelt thank-you from his family. We are forever grateful. To the people
from the Coping Centre, you have become part of our journey, too. You helped
us grow through sharing your pain. We love you guys.
Finally, our families and friends- we could not have managed at all without
you. From the moment Tyler was born until now, you have been a source of
strength for us. There is no way we could ever thank you enough.
Tyler would have been one year old next week. Happy first birthday, my baby.
Tyler Ray Biffis 29 July 2004-28 November 2004
Forever loved, forever missed,
Love, daddy and mommy
Pam and Darrell
Contact: bifman@sympatico.ca |
|
