I AM RICH!

I am RICH! I am so fortunate that I live in a home. I can control the temp to make my sleeping daughter comfy. I live in a "safe" neighborhood, and just in case it's not, I have an alarm. I was able to put her to bed with a full stomach tonight, as I do every night. If she falls sick tomorrow, I have access to good medical care. Her clothes and bedding are clean. Disease-carrying pests are controlled. My daughter has the same opportunities as anyone else, nothing to hold her back. If she applies herself, she can do anything. Some people cannot say ANY of this. I am rich!

AH!  FRIENDS!


Mike and I had a WONDERFUL weekend seeing good friends from Nashville!  Bill and Shelly Colburn came for a very brief visit, but we are so appreciative they drove all this way to spend some time with us.  It just felt so GOOD to be in the company of good friends!  The moment they left, Mike and I wanted to follow them and yell DON'T LEAVE!!!!!!!  That is the ONE thing that really sucks about living in Charlotte right now...our friends aren't HERE!

THANKFUL FOR ALL THE GOOD

I am SO THANKFUL every day for all the good (and there is lots of it) in my life.  I have a loving and supportive family, a husband who is a wonderful, intelligent, kind human being, good friends (who I miss terribly BTW), health, a career I love (when I am doing it), a home to come back to, food (lots and good quality) in my kitchen, and my ever-so-sweet, strong and beautiful baby girl.  Sure, we have had some rough spots in our journey with her and we will have some more coming up, but overall, she is healthy and thriving!  She is AMAZING!

This week, another family in one of my support groups lost their sweet little girl.  She was just a month younger than Priya.  Her omphalocele was much larger and more complicated that Priya's, and her road has been difficult.  Lots of large O babies do well like Priya, but some just have a tougher time, and Feighlyn had a really tough time.  Her and her family have been going through one obstacle after another, and many of us have been going through the obstacles with them emotionally.  The MOO group is a very tight-knit group, and we follow eachother's families throughout our little O-babies' lives.

I am so fortunate, so very fortunate.  There is no rhyme or reason to why I got the beautiful Beckwith Wiedemann baby with a small O and this family got the beautiful large omphalocele baby with all the complications.  It just is, and it's...hard...and sad.

The fact that we have technology to connect us to other people who can feel our joys over little things that other parents might very well take for granted and worries that other parents will probably never have to deal with is such a blessing.  We can check in with one another, ask questions, share stories and anecdotes, and cry with one another.  We can vent to people who understand when no one else can.  We can let each other know when we will be in someone else's neck of the woods for a meetup.  We can pray for or send someone supplies we no longer need to someone who does.  It is awesome to have such a community with its connections.  So much good comes from it, but also some heartache, and this week has been a heartache week.

WHEN THE LIGHTS GO OUT

When the light goes out, how great is the darkness!

Priya is the light of my life! She lights up my world like no one and nothing else can.  She makes every day brighter by just being in it.  I cannot imagine going a day without seeing her beautiful, bright eyes and sweet, happy smile!  This week, one of my Beckwith-Wiedemann families lost their little light.  He was just two months shy of his second birthday.   My heart hurts so much for them.  

It is not uncommon for kids with BWS to need trachs to assist with breathing through their airways.  Eventually they are able to be weaned from their trachs, but it can take some time.  When Priya was in the NICU, there was a certain point where we thought she might need airway assistance by trach, but fortunately that wasn't the case for her.  Well, this little boy did need one, and he pulled it out while sleeping this past week and and never woke up.  

Ouch.  Heartache.  

BIG THINGS CAN COME IN SMALL PACKAGES

BIG weekend, small package of time...  Friday evening, we headed to Orlando for Aaja's ordination and Priya's baby dedication.  Priya's Aaja and Aaji are loved by lots of people, the church was packed and the service was really nice. This was the first time Priya met her Uncles Joel and Jerry, Sister, cousin Gian, and Auntie Mengkha.  It was Priya's first sleepover with her aaja and aaji while her mommy and daddy went out to celebrate her Uncle Lee and Joel's birthdays (fun, fun).  We had an excellent brunch Sunday morning at Sister and Uncle Jerry's house before making the long drive back to Charlotte.

IF I COULD ONLY BE A FAIRY-DUST AUTHOR...

Poppy's mom is a friend of my parents.  I have been following her story since before she was born.  Poppy was born with left hypoplastic heart syndrome and has had multiple surgeries since birth, and it just seems like one thing after another for her family.

I am sitting here drinking my morning coffee, flavoring it with my tears.  This poor baby.  Her poor parents.  Her poor big brother.  Tough as nails baby.  Tough, because they have to be, parents.  Tough story.  I wish it was a story I could rewrite.  It would go something like this:

I would wave my wand (with a shiny little star on top), say something like, "Bibbety-bobbety-boo, and bless you too." Fairy dust would rain down on Poppy's little head, scars would heal, and she'd ride away from the hospital for the last time in her pumpkin-turned-chariot, and she'd go home dancing in the arms of her parents, happily ever after, and hospital visits would be banished to the far corner of the land of Distant Memories.  THE END

https://prayforpoppy.wordpress.com/once-again/