We learned halfway through our pregnancy that our second son would not only have Down Syndrome, but that he would also have a congenital heart defect known as Complete Atrioventricular Canal Defect that will eventually require Open Heart Surgery. This is our journey...
13 July 2013
Luke's Baptism Photos
Tomorrow morning Luke will be baptized into the kingdom of our heavenly father and we will promise to raise him in accordance with the word of God. In preparation, this afternoon I dressed him in Matthew's old baptism suit to make sure the fit was right... while he was dressed up, I decided it was worth taking a few photos so we can look back on this spiritual milestone for our family.
For fun, here is Matthew in the same outfit when he was 4 months old courtesy of Courtney Broome Photography!
Bare Skinned Babies
This morning I re-calibrated the settings on my camera (last used to capture fireworks on the 4th of July) and spent a few minutes with Matthew and Luke taking in some shots of our bare skinned babies! Baby skin is so wonderfully soft, I hope I will always remember what it's like to hold such silky skin!
On another note.. I cannot believe Matthew was so smiley for the camera this morning... he was up last night at 12:05, 12:35 and again at 12:55. Eventually I pulled him from his crib, grabbed a blanket and moved to the recliner, which is where he and I slept until 6:30 when he woke up begging to read a book. Additionally, I know that Luke was also awake during the middle of the night because I distinctly remember hearing him cry and then kinda sorta remember seeing the light come on in the kitchen as Dustin worked to prepare him a bottle. It's a good thing we are a good team, while our kids generally sleep pretty good throughout the night, raising essentially two babies can be brutal sometimes!
On another note.. I cannot believe Matthew was so smiley for the camera this morning... he was up last night at 12:05, 12:35 and again at 12:55. Eventually I pulled him from his crib, grabbed a blanket and moved to the recliner, which is where he and I slept until 6:30 when he woke up begging to read a book. Additionally, I know that Luke was also awake during the middle of the night because I distinctly remember hearing him cry and then kinda sorta remember seeing the light come on in the kitchen as Dustin worked to prepare him a bottle. It's a good thing we are a good team, while our kids generally sleep pretty good throughout the night, raising essentially two babies can be brutal sometimes!
| Luke has pretty much earned the title, "Master of Tummy Time"! |
| Besides, that "oh so adorable" smile, isn't his little wisp of hair on the left so sweet? |
| For the last year, I've been finding myself repeating "this is the best stage so far" and somehow it manages to just keep getting better. I love being a mom! |
| I absolutely adore this kid. |
08 July 2013
A Tribute: Christine (Christy) Ann Koolen
I
read the obituary below last night and afterwards I couldn’t sleep…
I mean I actually did fall asleep after going to bed, but was awoke
with thoughts of both Christy and my
son Luke at 2 AM and stayed awake until my alarm went off at 5:15
when it was time to get ready for work. My thoughts were complex (as
you’d expect if they were enough to keep you up in the middle of the
night) and the themes centered around the wonderful
impact Ms. Koolen had on the world around her… it was obvious based
upon the wonderful words chosen by her loved ones. I was also struck by
the story about Christy in the Special Olympics… the visual created in
my mind while reading those few sentences was
nothing less than a moment of magic and I can only hope to someday make
such a wonderful gesture of teamwork and support for others.
Just amazing. And then my thoughts traveled to Luke. What will his
future bring? What treasures does he hold in
his heart that will someday be released for the betterment of our
world? What does this mean for Matthew? What will he learn from his
brother? How will they work together? Will he have the same kind of
love for his brother that Christy’s siblings had for
her? I have so much anticipation for our future. And then, when I
still couldn’t sleep… I prayed. I prayed for Christy Koolen’s family,
those she’s touched and is leaving behind and then I talked to God about
Christy and shared how I hoped such a special
person was playing a wonderful role in heaven and also that she had a
beautiful reunion with her mother, no doubt a strong and loving woman
who rebuked the system and an American culture who didn’t do a good job
of supporting individuals with special needs
back in the 50’s – what a wonderful mother she must have been! And
then I prayed for my family… for Matthew and Luke and me
and Dustin. I prayed to God that he would forgive our sins, our faults
and that he’d continue to open our hearts to the future he
has in store for us. I prayed that our family will find a way to make
the most of our lives and that we will support, love and uphold one
another until our days here are over and we are reunited in heaven. And
then my mind reeled some more and finally I
was up with a cup of coffee in hand, ready to start the day. I know I
will continue to reflect on the full and fulfilling life of Christy
Koolen and am grateful to her family for lifting her up in a way that
shared such inspiration for me and highlighted
the wonderful potential in store for baby Luke! Besides the fact that I’m a bit sleep deprived, I feel so blessed today!
Christine (Christy) Ann Koolen - November 20, 1952 - July 5, 2013
In
1959, Christy moved with her family to Billings, where she attended
special education classes at Children's village (a program started by
parents of Down Syndrome children) and
then at Garfield School until she was 20 years old. She then attended
the Sheltered Workshop (later COR Enterprises) for the rest of her life,
where she achieved many commendations for perfect attendance while
helping with projects stuffing envelopes, shredding
paper, and other activities. She liked her teachers and friends at COR,
especially her lifelong "boyfriend" Kenny Murphy, with whom she enjoyed
having lunch together every day. In their younger years, Christy and
Kenny enjoyed getting together to play records
and to go bowling with their peers every Saturday morning at Center Lanes. When asked how she did at bowling, she always said she "got 4 strikes" because maybe that had happened once.
Christy
loved to dance and never missed going to dances sponsored by the
Yellowstone Association for Retarded Children (YARC). She and her mother
were members of First Presbyterian
Church, where they had many friends. Christy loved to listen to her
many record albums and she loved to watch her favorite programs on TV.
Somehow she knew what programs were on every channel even if she didn't
watch them. She loved her black cocker spaniel
"Patsy" and she never went anywhere without her Slinky in hand.
Christy
accompanied her mom and dad nearly everywhere for most of their lives,
and after her father Marty died in 1977, Christy and her mother Althea
remained inseparable, living
in the family home until Althea was diagnosed with Alzheimer's in 1996
and St John's Lutheran Home welcomed both Althea and Christy to continue
living together at St John's. After Althea died in 2002, Christy was
able to continue living at St John's, where
she was "adopted" by the loving and caring staff (and the residents) as
their own little sister. The nurses and residents loved hearing Christy
giggle, loved making her laugh, loved to hear the beautiful music
coming from her record player, and loved to dance
with her in her room. When Christy herself recently fell victim to
rapidly progressing Alzheimer's, she was lucky to be in the best
possible place for the finest care from those who loved her.
Christy
was preceded in death by her parents, Marty and Althea. She is survived
by her brothers Marty Jr. (Jacquie) of Fremont, Neb., and Kent (Susan
Nybo) of Billings; her sister
Gretchen Wagner of Red Lodge; her nieces Heidi Wagner of Billings and
Kim Salacinski of Denver, Colo.; and her nephews Jason Wagner of
Billings, Jeff Koolen of Lincoln, Neb., and Marty IV ("Dutch") and Mike
Koolen of Minneapolis, Minn. She is also survived
by her extended family of "sisters" who cared for her at St John's, and
will be missed by all who knew and loved her. She NEVER complained,
even to the last, and was thankful for everything. She was a gift to us
all, a blessing in our lives. She was that rare
soul of gentle purity, devoid of anger, pride, jealousy, selfishness,
or any of the emotions that demean the rest of us. She was pure
innocence and joy, kindness and respect, happiness and compassion, humor
and good-natured mischief, and wit that would surprise
and delight us. She simply brought out the best in all who had the
privilege to know her. As an example of her selflessness, when she was a
young girl she entered a race at the Special Olympics and was actually
winning the race when she stopped short of the
finish line to turn around and happily applaud her fellow racers,
cheering them as they crossed the finish line - ahead of her.
Cremation
has taken place. A memorial service in Christy's honor will be held at
the Kathy Lillis Chapel on the campus of St John's at 1:30 p.m. on
Tuesday, July 9. The family extends
its heartfelt gratitude to the angels at St John's Lutheran Ministries
for all the loving care and compassion they provided to our little
sister all these years. In lieu of flowers, the family suggests
donations to St John's, COR, YARC, or the charity of your
choice.
Read more: http://billingsgazette.com/
05 July 2013
Luke Rolling Over
So it's been happening for a while now, but I've only recently captured it on film! Yesterday morning I was able to get Luke rolling over on camera! He doesn't actually roll until it gets closer towards the end so you may consider fast forwarding!
Matthew and his Harmonica
For fun... here is a video of Matthew learning to play his new harmonica! I love when he tries to make the sounds of the harmonica with is voice instead of blowing air to make the music! Kids are so funny!
I caught Matthew trying to teach Luke to play the harmonica too. Unfortunately I wasn't quick enough getting the camera open on my phone, but he was willing to recreate the moment and let him try again...
PS - Please ignore the half shabby-chic painted buffet in the background! It's been a project we've had in the works for nearly two months now... hopefully someday soon we'll get it finished!!
I caught Matthew trying to teach Luke to play the harmonica too. Unfortunately I wasn't quick enough getting the camera open on my phone, but he was willing to recreate the moment and let him try again...
PS - Please ignore the half shabby-chic painted buffet in the background! It's been a project we've had in the works for nearly two months now... hopefully someday soon we'll get it finished!!
Canning Black Raspberry Jam / Judging Criteria
I took a half day off work this afternoon to capitalize on the abundance of ripe red raspberries following all this rain we've been getting. I have some work to do this afternoon since I plan to make the rounds on our backroads scouting for the typical advertising of our local Amish that typically consists of a standard end-of-the-driveway sign that's either been handwritten or sometimes stenciled and painted.
My goal is to make enough for our family and also the family of a cousin who is coming home today from the hospital with her third baby. I already have half pint jelly jars, Pectin, sugar and a few recipes, so the berries should be sufficient in completing what we need to get started. I spent some time earlier this week reading up on the basics for canning county fair worthy jams and thought I'd share for others who also enjoy preserving - Judging Criteria for Canning.
Judging Criteria for Jellies, Jams, Preserves & Marmalades
I'll update later with some photos :)v
My goal is to make enough for our family and also the family of a cousin who is coming home today from the hospital with her third baby. I already have half pint jelly jars, Pectin, sugar and a few recipes, so the berries should be sufficient in completing what we need to get started. I spent some time earlier this week reading up on the basics for canning county fair worthy jams and thought I'd share for others who also enjoy preserving - Judging Criteria for Canning.
Judging Criteria for Jellies, Jams, Preserves & Marmalades
Appearance 30%
Color-characteristic of fruit, clearness-jellies, translucent.
Container-glass, practical, clean sealed lids no paraffin seals, neatly labeled, specific size.
Texture 35%
Jelly-tender, should quiver, cut easily and retain shape, no crystals.
Preserves-pieces firm and whole. Clear, thick syrup.
Marmalades-small, thin pieces. Clear, thick syrup.
Butters-fruit that has been pressed through sieve.
Jams-crushed fruit, no separation of fruit and juice.
Flavor 35%
Characteristic, without excessive sweetness or overcooked flavor.
Total 100%
I'll update later with some photos :)v
04 July 2013
Independence Day 2013
I have been having so much fun getting to know my camera over the last few months! I took these photos tonight during the Wooster fireworks and I can't wait to find another photography class to take so I can learn more new tricks... I really feel like I've improved since the basics class that I attended back in April and while I know I have a long way to go, I'm gaining confidence along the way and am really enjoying building some new skills! Prior to the fireworks starting, I googled some basic settings for capturing fireworks and then spent some time with my manual before it got dark. There were some trees blocking my shots (mental note to find a better location next time) and the rain sprinkled some, but otherwise it was pretty fun and I'm learning how cool it can be to experiment with various settings! Happy 4th of July!
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