Wednesday, July 13, 2011

Why Me?...Life's too short!

Early this morning, I took our dogs to the school field around the corner from our house.  Our weimaraners, Frieda and Blue, were playing with another dog, Tao,  a ridgeback. Actually Tao kept taking Frieda's ball so Frieda kept chasing Tao, who was chasing Blue ...   so the owner and I were just talking and turns out he and his wife had their first child, a baby girl,  just 2 days after Lucia was born!  They delivered at the same hospital and our stays overlapped- even our time in the NICU overlapped..   I asked how it was going and he went on to say 'not well'.  Their daughter got a staph infection and has been in isolation, given meds,  gone to specialists, has the same pediatrician and they even have the same numeric address as us- just 2 streets away.  She is going to be just fine but they have had a very tough start.  I hope our little girls will be friends someday.
He asked us how we were doing and I filled him in a bit on Lu.   When he was talking about his sweet girl he said,  "I think why me, all our friends have healthy babies, maybe because we are older..."  When he said the words 'why me" it felt so strange and I've thought about it all day.  Who knows why me, us or anyone- why not?   No one chooses or deserves to be born with complications or have disabilities.   No one chooses to have problems eating, walking, talking..  No one chooses to have a special needs baby instead of a perfectly healthy baby.  It's something you don't think about or prepare for- it just happens- and why wouldn't it?  There really isn't time or a reason to think why me.   The odds of having a child with a rare syndrome are crazy but they are just odds and it happens and things could definitely be worse.
Since we have gotten Lucia's diagnosis and read about other PKS kids, we do pray that she is in the minority for many of the symptoms- she's able to walk, communicate, have mild cognitive issues, avoids seizures, and most importantly is able to understand feeling loved and that she is just a happy girl.  Yes, we thought that our child would play soccer or tennis, but today we wish with our whole hearts that she is a happy little girl that is able to feel the love all around her.
Little Lu had a great day.  She smiled at me two times and was alert and awake for most of the day.  We hope that she smiles more tomorrow and reaches out to touch our faces and will someday reach for out to hold our hands.  Why does Little Lu have to have such a rough start and diagnosis?  Only God knows the answer to that and maybe Lu knows too.  Maybe someday she will share why she chose us but for now as my father in law, Mario would say, "Life's too short,  Onward and upward!"  We LOVE you Mario!  And yes- Onward and upward Little Lu!  Why not?!

Mario and his sweet, sweet poodle, 15 year old Toby.  

5 comments:

Laura said...

Jules, Jason and Lu,
You bring so much love and beauty to our lives. Thank you for sharing your heart on this blog. Love you so so much!!!

David said...

"today we wish with our whole hearts that she is a happy little girl that is able to feel the love all around her."
She does! She smiles right? She does!

beth said...

Juliet and Jason - you are so brave and such good parents! Lucia is so lucky to have you. I'm sure her smiles are precious! Keep on doing what you are - she is beautiful!

Diana said...

I love reading your thoughts! I think that Lucia already knows how much she is loved. She smiles and that means something! We too feel life is much too short to think "why me". We are take life moment to moment and enjoy every moment we can with each other. I sincerely hope we can meet up sometime in the near future. We are not going on our vacation as we planned, but instead have been vacationing at RHMC with rare complications from Lexi's Nissen. We embark on surgery #3 since her Nissen tomorrow morning. We would appreciate any extra prayers. Also, I am curious who your GI doc is.

Diana Skinner

Tate said...

God bless you, sweet Jules, Jason and Little Lu!! She will know soon enough how much she is loved..