Going through the NICU journey I have been consistently asked how we have managed, what it’s been like for us, and how we are
doing. Well one thing that has been very therapeutic for me is writing. I have
always loved writing whether it is in my journal or writing stories. As I found
myself traveling to and from Tulsa not always having my journal, I began to
type my thoughts. Finally after going back and forth on beginning a blog I
decided to share some of my thoughts. Some have told me I seem to be pretty
positive about all of it and I am, but I can assure you I have plenty of rough
days too. It is also very intimidating to put my thoughts out there for others
to read. It is one thing to share updates on Kaleb’s progress through this
journey, and quite another to share how I have and am processing this journey. I
have decided that so many people have traveled and followed this journey with
us that I wanted to be able to give an inside look at this crazy adventure that
has been Kaleb Craig. Someday soon I do hope to go back when I can catch a
breath and share more of the first three months of Kaleb’s life. To share how
it played out, the emotions of frustration and anxiety, and the roller coaster
ride which is the NICU.
I've wondered what I would even call the blog if I were
to write one. Tina, our NICU lactation consultant suggested the name “A Royal
Prince.” Given how we are huge Kansas City Royal's fans and he was born the
year the Royals won their second World Series. While I ended up going with a
different name because I wanted something that didn't leave out Kaden who of
course plays a huge role in the life lessons I constantly learn, I did think
the name was fitting for another reason. A Royal prince. As a child of God we
are royalty. But with my youngest son there were some questions and
conversations with God. The questions of why? Why us? Our life was going great
and smooth before these hurdles. Even more, the bigger question became why him? The
terms associated with Down syndrome would constantly race through my head. Hypertonia
(low muscle tone), delayed fine and gross motor skills, delayed cognitive
skills, mild to moderate cognitive disabilities, etc. The one that blared in my
head was the more outdated term used of mental retardation. As a parent you
want the world for your child. You want them to reach their full potential to
live a full and successful life. I wondered and worried what that would look
like for Kaleb. Kaleb who has had to show his fight and will to live from day 1
arriving at 28 weeks due to reverse blood flow. I would then always go back to
the verse fearfully and wonderfully made (Proverbs 139:14). He is a child of the King. A king who
doesn't make mistakes. I reminded myself he is still Kaleb, he is still the
child who I prayed for while pregnant, whose heartbeat I listened to on my home
sonogram, whose picture I closely studied on every ultrasound picture, and tenderly
rubbed my belly where he kicked. He is still the child I knew had a purpose in
this life. Sure he did not come when we wanted or how we wanted. He came with
an extra chromosome we didn't expect, but he is ours. He was still created by
my heavenly father and does have a purpose. He was still fearfully and
wonderfully made.
A nurse told me the other day, "Yours is one of
the happy stories." It caught me by surprise and struck me as funny. In
these three months, that is I believe the only time happy as been used to
describe this journey. That got me to thinking, in children's stories do not
all of the books have obstacles and hardships? In the end the happy ending results from
personal growth of the characters, individuals banning together to achieve a
goal, and/or coming together with love. Does our story not have that? This
journey has already taught me more and spurred more personal growth than
anything I have been through in my life. I have been humbled and carried
through in the rough times by the support and prayers of family and friends and
together we will soon achieve the goal of graduating from the NICU. Then that
leaves love. This kid has definitely provided that. The love that I feel for my
youngest as I watch him fight for his chance to grow and thrive. Love that I
like to think that he can feel from me and for me as he curls up against my
chest for cuddles. Love from family, friends, churches, and communities as they
have followed his updates and have fallen in love with this little boy who
began his life at a whopping 2lb 2oz. So yes ours is a happy story. So I
decided I will start a blog sharing our stories. Sharing our adventures,
reflections, and life lessons. So...
"Once upon a time two parents gave birth to a Royal
prince..."
I love all of you, but especially the Royal Prince. You all have been a blessing to many of us. We won't forget you guys, and you must come visit now and then.
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