My blog post from last May 19...it's a year later I am reflecting on where we were a year ago and what our family looked like now seven years ago.
May 19, 2011 - Six years ago life looked very
different. Our
daughter, Emma, was weak from nearly four years of battling Cockayne Syndrome
and she hovered between two worlds...closer to Heaven than we could ever
imagine on this day, six years ago.
Six weeks before Emma died she developed pneumonia. It was treated with high doses of antibiotics, breathing treatments and medications to make her more comfortable. Hospice came in several times a week to check on her. We prayed the antibiotics she was receiving at home would beat the infection. After nearly two weeks she did improve. Although she was weak and her immune system had become virtually non-existent, she managed to smile again and laugh for us. During the time she was sick with pneumonia I did much reflection on what life was like when you have a terminally ill child. We were faced with the unavoidable fact she may not improve.
Six weeks before Emma died she developed pneumonia. It was treated with high doses of antibiotics, breathing treatments and medications to make her more comfortable. Hospice came in several times a week to check on her. We prayed the antibiotics she was receiving at home would beat the infection. After nearly two weeks she did improve. Although she was weak and her immune system had become virtually non-existent, she managed to smile again and laugh for us. During the time she was sick with pneumonia I did much reflection on what life was like when you have a terminally ill child. We were faced with the unavoidable fact she may not improve.
She could have died from that
first pneumonia, a foreshadowing of what was to come. We didn’t have a
timeline or insight into what would happen. The only thing we could
rely on was guidance from God and our trust in His plan.
Our daily life, our "normal",
was a myriad of contradiction. Oxygen tanks were placed throughout our
home with tubing running all over the floors and down the stairs, a baby
bed was kept downstairs to keep Emma comfortable during the day and so
we could constantly monitor her oxygen levels and condition. Lining the
oxygen tanks and wiring were Little People toys, pacifiers, and GI Joe
toys for Peyton and Paige. Paige took her first steps as she gingerly
stepped over oxygen tank tubing. Emma was on 24-hour continuous
feedings through her feeding tube and we had to keep track of her
pulse/ox stats on an hourly schedule. I kept up with multiple
medications, feedings, and breathing treatments taped to kitchen
cabinets on a nursing chart. Along with caring for Emma there was the
coordination of ordering medical supplies, prescriptions, authorizations
for medical equipment, keeping in touch with the insurance case
manager, hospice nurses, social workers, a child counselor for Peyton
and trying to make sure Peyton and Paige’s emotional well being was
cared for. In addition to caring for Emma, Peyton, and little Paige,
the local newspaper was following our family doing a story on life with a
terminally ill child. Every week the reporter kept in contact with me
about what was going on in our lives. He shadowed our family as he
gathered information for the story. Our hope when contacting the media
was to initially draw attention to Cockayne syndrome. But as the months
wore on and Emma declined I began to realize the story was evolving
into our journey, our faith, and the depths of our character. A
seemingly simple letter to the newspaper asking to enlighten the
community on a rare syndrome became a window for the world to peer into
our lives and how we managed to maintain a positive outlook.
In the midst of daily life, Eli and I
tried to make everything easier for Peyton and Paige by spending one on
one time with each one every week. We would laugh a lot, act silly with
our kids and try to just enjoy each other. Our life was unpredictable
because we never knew what would happen to Emma on a daily basis. Plans
had to be changed constantly. I was rarely able to attend field trips
for Peyton’s school. At times sadness would sink in when I felt others
were judging me; the kind of friend I was able to be at the time, my
children’s sometimes outbursts an obvious sign of their need for more
attention. Then I would think to myself “are these people walking in my
shoes?” The people who judged us didn’t have a clue what it was like
to be the parent of a terminally ill child. Most of all Eli and I felt
sadness for the people who seemed to view our life as a tragedy. Each
day we were filled with joy, hope, and knew well the gift we had been
given.
Emma taught each of us unconditional
love – each time she would decline, would require a new medication,
oxygen, and eventually hospice we would accept it, and embrace it just
as we embraced Emma. It was never a sacrifice to care for her and I
would have taken care of her the rest of my life, my “little bit” like a
koala bear always in my arms. As my faith has been nourished, grown
and deepened over the years the Lord has shown me through His grace,
Truth. And Truth knows something else; it was Emma who was carrying me, teaching me through her life about Unconditional love.
Our life..six years ago.
Life was pushing Emma close to Paige every morning while she ate breakfast because...
Sisters wanted to hold hands.
Life was big eyed babies...
Who were always into something quite messy.
Life
was Spider Man loving his sister no matter how many wires there were to
manage. Life wasn't a diagnosis, a prognosis, a genetic mutation...life
was loving Emma and to Peyton she was simply
"My sister..Emma"
Life was three babies crowding around mommy.
It was a myriad of contradiction, difficult to balance two worlds.
But I would do it all over again. This is Peyton and Paige on May 19th, 2005.
Two children outside playing in the sun while inside Emma held on, surrounded by friends, family, hospice...waiting for us to all say goodbye.
Three days later she passed away, in my arms, wrapped in her pink blanket. Her soul soaring into Heaven.
Seeing in full color, taking her first steps in Heaven. What a glorious homecoming!
But we were left in shock, almost unable to know how to put one foot in front of the other.
Life was not wanting to let go but knowing ultimately...saying "It's okay to Go" was what Emma needed from us the most.
Hope never left and we feel Emma with us always.
Life went on, but with two babies instead of three.
Emma's smile will forever stay with us and she kept her sweet smile to the end.
Our
family looks different now. If you didn't know us six years ago you
would never have an idea of what life looked like then. We have formed
bonds which have grown stronger over time, faith in God that
has sustained us, Hope in the future, laughter which explodes throughout
the house, thankful for the short time God gave us Emma and for the
lessons He showed us through her life.
Her greatest gift to us was that the Lord showed us a glimpse of Him, and his overflowing Grace through her life.
We
look forward to the day when once again there will be three children in
our home, making memories, another child to share the love of Christ
with and teach that in every situation
WE LOOK UPWARD
and there is
Hope.
Keep looking UPWARD Little One
And now today, May 19, 2012, God has once again grown our family through faith in Him. Once we were a family of two, with a crazy dog, and cat. Then we became a family of three with our Peyton bug. God gave us Emma within 18 months of having Peyton and we became a family of four. Paige came two years later..amazingly we became a family of FIVE in four years. Then, we stumbled along for a while as a family of four again. We mourned, rejoiced, healed, all the while holding onto God's promise we will be reunited with Emma.
Now, today we are again a family of five. The road has been filled with twists, turns, tears, laughter, learning to let go, lay it down, humble ourselves, strive for a teachable spirit and above all...obedience to our Father in Heaven.
It hasn't always been easy or made sense but life seven years ago, one year ago, and today...is reason to celebrate.
(life is still pretty messy)
(growing out bangs..fun)
