Wednesday, February 23, 2011

Joe Mantegna: A Prayer from the Bench

Our friend, Tim sent this to Nestor yesterday. It's always captivating to me to hear other special parents' stories. To hear about the very beginning, the uncertainty, then the dust settling and finding "normal," your normal -- is comforting and inspiring to me.
I was particularly moved by the end of the article -- let's face it, I was mush! I've always felt this about Amelia but never found the words to articulate it. Beautiful sentiments, truly.

Joe Mantegna: A Prayer from the Bench

Tuesday, February 8, 2011

Stories: Everyone's Got One

 Amelia is great and everything is going well with her.  Lots of wheels set in motion for her including: getting thru a Neurology appointment last week, where we met her new neurologist at Children's Hospital and set up an MRI for her (hasn't had one since the NICU) for the end of February.  Met with LAUSD in informal "Due Process" and settled for an hour of Speech and Occupational Therapy weekly, outside of what she is receiving in school.  And we are on the hunt for a medically based Feeding Therapist, which Amelia's former OT (the fabulous Debbie Rabin), is helping me out with.  And lastly, she will continue with her PT 2x's weekly at Joy for Kids.  We have an appt. with Amelia's new pulmonologist tomorrow at CHLA.  So things are finally falling into place out here.

Today I am sad.  So sad. 

My mom's oldest girlfriend has been battling cancer for years and years.  She is a tough broad and has overcome every bad prognosis doctor's have thrown her way over the years -- with a huge smile and the sunniest attitude you've ever seen.  She is the epitome of grace.  Her body grows tumors.  Lots of them.  She has had so many surgeries I've lost count.  Yesterday was the day they were going in to do another surgery.  Sadly, they opened her up and closed her right back up as quickly, unable to complete the surgery.  This was one of everyone's, especially hers', greatest fears. 

My mother's friend and her wonderful husband are huge constants in my life, whom I love very, very much and have known forever.  We've taken family vacations together, had countless dinners together and every time we're in town, without fail -- they (and really, all of my folks' dearest friends) make a point of coming over for a visit.  I am so blessed to have them as solid role models.  For those who have "Team Amelia" t-shirts -- she was the source! 

We also found out yesterday, that my sister-in-law, will have to undergo chemotherapy.  Several weeks ago she had a mass in her lung biopsied (she was never a smoker, mind you) and it turned out to be malignant.  She had a surgery a couple weeks ago where they removed the upper lobe of her lung, and several lymph nodes that were suspicious.  Her prognosis is good, so we are all very grateful for that.

Time marches on.  Nestor and I have our story.  Amelia is a huge part of that story and all the things that can and will happen.  We have a child with special needs who will depend on us for a very, very long time.  But we all have special needs.  We all depend on each other for a very, very long time. 

I am so lucky to have two parents, who have each battled cancer and won, victoriously. 

I have a child who overcomes odds everyday and keeps fighting. 

I am sad for the stories, but I am lucky to be a part of those stories and I am so grateful for all the blessings.