Happy Halloween 

 from Superman and The Flash!

We decided to do a homemade costume this year for Bennett since we already owned the cape* and pajama pants.  The great thing is every bit of their costumes can be used and worn again.  *Bennett's cape is really cool because it can be turned inside out to be a Batman cape.


Bennett's shirt is from a really talented gal on Etsy who upcycles vintage tshirts.  The shirt is actually made to be worn as an every day shirt so we'll get plenty of use out of it.  The red rainboots are from Kmart.  The belt is made from yellow duct tape.


Ok, my favorite part of Bennett's costume has got to be his tiny red underwear.  I couldn't find red underwear in toddler size so I found another great seamstress on Etsy who makes underwear for kids.  When we are done playing with it on the outside of his clothes and once Bennett is fully potty trained, we'll use them as actual underwear.


Oliver's costume is similar to Bennett's.  I found Oliver's mask at a party store and used foam to add some lightening bolts.  His shirt was made and appliqued from old tshirts by a gal on Etsy.  His pants are part of a red Angry Bird pajama set.


His boots are Crocs Boots I found on Ebay. Oliver's belt was handmade by Dad out of duct tape.

The boys love their costumes, which makes me so happy.  They have waited so patiently to wear their costumes and to go Trick or Treating.  I'm so glad this day has finally arrived!

Happy Halloween,

This is a video Brian recently took when Bennett's Bear named "Pumpkin" wanted Bennett to show him how Bennett's Cystic Fibrosis Vest and Nebulizer Masks work. What Brian and I both loved was seeing how quickly Bennett completely suspended reality and joined Brian into the world of pretend. Bennett seems to really want to reassure his bear that his treatments are not scary. I love how beautiful and innocent childhood can be.

I love going back and comparing pictures.  I enjoy seeing how our family has grown and how our boys are developing.  I'll be honest, I don't much like looking at myself 9 months pregnant in the first picture.  but as mom blogger Allison Tate suggests in her Huffington Post essay, our kids need us to stay in the picture, so I'm glad I am.

Pumpkin Patch - 2009 (Oliver, almost 2; Bennett, almost born)

A few weeks ago, after my posting pictures on the blog about the new Hill-Rom bear we received in the mail, KWTX's Emily Iazzetti host of MomsEveryday, a local mom's TV show in Central Texas contacted me.  She said she read the blog and found Bennett's bear to be adorable.  She asked if I would return to the show (I originally shared Bennett's story on MomsEveryday last May) and talk more about "Pumpkin."

So, last week, I came onset and participated in a 3-minute recorded interview, which aired live today.  Since the interview was recorded, I didn't get to see the interview right after I gave it so I have been so nervous all week to see how it turned out: "did I make any sense at all!?"  Thankfully, though, it looks like I did make some sort sense, afterall.

I am so touched to have been asked to share more about our journey with Bennett.  It's one of the weapons I feel I have against this horrible disease: to share our story with the hopes it helps others along the way.



(or click here: http://ww2.momseveryday.com/video?autoStart=true&topVideoCatNo=default&clipId=7881723)

If "a picture is worth a thousand words," this one is worth a whole book.

During our recent family photo shoot, Khimberly asked me to put my forehead to Oliver's forehead, to hold is chin with one hand, and to have him put his hands in my other hand.  It felt a bit awkward.  We were eyeball to eyeball, hand to hand.  But I had no idea what amazing shot that would turn out to be.

This might be a perfect analogy to my learning how to be a mother to Oliver.  At times, it has felt unnatural and yet I can describe it as nothing less than an amazing experience.  The last five years have been my learning how to love my son.

He was a fussy baby.  Even as an infant, he did not like change.  He wasn't easy-going.  He didn't like to sleep.

I was a new mom, living far from family, trying to balance a new baby while working full-time supporting my husband through grad school.

I didn't know how to raise a little boy.  For some reason, I had expected my firstborn to be a girl.  I had to grieve that I would not experience pink hair bows and baby dolls.  Instead, I would be trading them for "snips and snails, and puppy dog tails."

I was in the middle of that process, understanding what it means to be a mom to boy and learning to appreciate Oliver for who he is, when tragedy struck our family.  Oliver's little brother was born gravely ill.  The next two years were spent in and out of the hospital and at clinic appointments, grieving Bennett's diagnosis of a terminal disease, and balancing a new little baby whose birth was overshadowed by his illness.

Oliver, who never liked change in the first place, struggled to cope.  His mom was no longer able to be as emotionally present as she had once been.  His dad was preoccupied with supporting his family while also attending to his first year in a Ph.D. program.  Bennett's condition screamed for our attention.

It was clear Oliver needed extra support.  I reached out to a play therapist.  Each week, the play therapist would "listen" to Oliver through his play and later explain to me his feelings and needs.  It was hard for me to understand how integral I was going to be to helping Oliver.  I viewed Oliver's problems adjusting as something separate, something outside of me.  What I didn't realize was Oliver's behavior problems and difficulties adjusting were directly related to my own struggles to feel safe during such a difficult time.

Oliver felt out of control and misunderstood.  At the tender age of two, his world had just been turned upside down.  He kept wanting me.  But the more he wanted me, the more overwhelmed I felt.  And the more overwhelmed I felt, the more distant from him I got.

Oliver was feeling abandoned and afraid I did not love him.  He may have even picked up on my deep-seated yet unconscious desire for a daughter, my feeling helpless as a mother when it came to raising a little boy.

But, ever so slowly, with guidance from Oliver's play therapist and as my own therapist helped me unknot the grief I held deep inside, I began to understand what Oliver needed.  He needed me to show him over and over again that I loved him, completely and unconditionally.  Children don't understand words, they understand actions.

I began to learn specific ways I could demonstrate this love to Oliver.  Some ways that felt natural.  Other ways that did not.

As Bennett's health improved and my stress lessened - as our family life felt less tumultuous and my relationship with my firstborn improved - Oliver felt safe again.  Eventually, Oliver's behavior gave way to a childlike happiness and overall peacefulness we had not seen in Oliver for a very long time.

Like the clearing of clouds on a rainy day, slowly, I began to see through the difficult behavior, crying fits and extreme anxiety-filled moments to find my son had an extremely gentle spirit, an inquisitive mind and wonderfully loving demeanor about him.  All he wanted was to feel safe, loved and delighted in, from me.  And I just didn't know, in my inexperience as a mother, how to give that to him in a way he could understand.

What I love about this picture is it tells a story about a mom who is in love with her baby, exactly the way he is.  And it is a story about a little boy who now confidently knows he has his mother's heart and her undivided attention at his fingertips.

I love getting this halloween-ish picture with our family.  I also love how we're "fall" from the waist up but all "summer" from the waist down.  This is because Texas Fall weather typically offers temperatures in the 60s in the morning but 85 degrees by lunch time!!


I didn't realize until we were done that Bennett had kept his sunglasses on.  Our sweet blonde-haired blue-eyed boy's eyes are super sensitive to light - so it was either sunglasses on or eyes closed.


Bennett and Lilli


Sweet handholding.

Oliver insisted that they hold these dried ears of corn for the picture.  Nice props, O.


The kids enjoyed the Duck Races, as they do every year.  However, it was nice that this year each kid could pump their own water to make the ducks swim down the gutter without much help from the dads.


The boys taking a break with Josh.


Oliver was so sweet feeding the goats.  He has gain so much confidence in the last year.  He makes me immensely proud.



Riding the "train" is always a kids' favorite.  (And when I say train, I mean little crates on wheels being pulled by a lawn mower.)  Sixteen-month old little Mabel (in the background) was such a big girl sitting in the seat all on her own!


We had such a great family day with friends at the Pumpkin Patch this year.  I love my little pumpkins and enjoy getting to watch them grow each year.  What little blessings they are!!

I wanted to share this funny video I saw today created by a young guy with Cystic Fibrosis.  He created the video on his own one night while in the hospital for a "tune-up."  (For non-CFers, a "tune-up" is typically a two week hospital stay where CFers are given IV antibiotics to keep their lung infections under control.)  Although Bennett has not had to go in for a tune-up yet, it is just a matter of time before he will.  Fortunately, so far, he has never contracted any lung infections, that we know about.  But, eventually, when he does, he will have to undergo these types of treatments from time to time.  So, I appreciate this video, it's humor, and the young guy behind it.
I think I like it because I know what it's like to be in the hospital day after day, staring at eggshell colored walls, listening to the constant beeps of machines, bored of TV and exhausted from the ever present parade of nurses, doctors, and therapists who are often more interested in their own time schedule than in yours.  
Being in the hospital is boring.  It's isolating.  It's lonely.  I experienced this during our repeated hospitalizations with Bennett during his first two years of life.  During several of the hospital stays Bennett was an infant so I often held him constantly, just as I would have done at home.  But I found he was often hooked up to an IV or feeding tube machine, which meant that essentially I was too.  The IV pole was a constant medical equipment presence, always connected to Bennett and never farther than a foot away from us at any moment.
I love this video because this is what you do when you choose to not take life too seriously.  This is where creativity goes when you're stuck in a tiny room where medical equipment lines the walls and your walking space is no more than a 4x4 area of cold hard tile.  This is what it's like to find humor in even the most of frustrating experiences.
This little video wasn't just funny to me, though; it connected to me.  Because, when I see this silly outwardly-healthy young guy stuck dancing a hospital room tethered to an IV pole when he should be out dancing with friends, I see my own son 15 years in the future.  I wonder to myself what Bennett will do when he's "in the hole" (what CFers call being stuck in the hospital).  I wonder how he will choose to cope with his condition when he is a young man, no longer interested in Mama sleeping on the hospital floor next to him.  If I'm right, I think, he would do something like this.  I think, he will be the kind of guy who will find a way to make every thing he does fun and find a way to make others laugh in the process.
I contacted Dominic to ask if I could post his video on my blog.  He shared with me he is an artist who lives in LA. and has a website called artistdominic.com.  In reference to this particular video, he said that he shot it at 1AM because "the daytime had too many nurses, docs etc coming in and out. Lol."  Oh, how I know *exactly* what he is talking about!!  
Thanks Dominic, for making me laugh today.   In the future, when Bennett finds himself with an IV pole dance partner one day, I hope he will chose to dance too. 

I had heard from other CF moms online that Hill-Rom, the makers of Bennett's Cystic Fibrosis Vest,  recently created a teddy bear that had it's own Vest that they were giving out to children who owned a Hill-Rom Vest.  I decided to call and see if we could get one mailed to us.  I was delighted when they said they would do so immediately!


Bennett was really intrigued that the bear had a Vest like him.



I was so impressed with this little bear!  Not only was the bear well-made but the Vest is absolutely looks just like the real thing!


Knowing we would later use this bear to encourage Bennett to his do his Vest, I asked Bennett what he would like to name his bear.  He doesn't have much experience with naming things so he went through: "Green Lantern?" "Iceman?" "Oliver?" "Mommy?" "Bennett?"  Finally, he said, "Pumpkin?"  I said, "yes!  let's go with that!"  And so it is, bear's name is "Pumpkin" (pronounced 'punkin').



After Bennett spent time giving "Pumpkin" spontaneous hugs (Bennett is a huge stuffed animal fan), he decided he wanted the Vest off.

Trying to get it off by himself...a tad bit frustrated.




I love this little Vest.  Check out the velcro, the black mesh inside and the official Hill-Rom tag on the straps.  It was sooo many adorable details that only a Mom of a child with CF can appreciate!


What do you do with a tiny teddy bear Vest when you finally get it off?  Turn it into a superhero glove!


I explained to Bennett that "Pumpkin" the bear has Cystic Fibrosis and will now need to do his Vest.  Bennett soaked it up.


Bennett began speaking to "Pumpkin" and asking him questions.


I explained to Bennett that "Pumpkin" is scared to do his Vest and asked if he could make him feel better.  Bennett was happy to reassure his bear that the Vest is not scary.


Bennett also explained to his bear how he does his mask without being fearful.  "Pumpkin" seemed much calmer after this chat.


Comparing Bennett's little Vest to "Pumpkin's" littler Vest:  The only thing missing from the little Vest are the tubes on the sides that are used to hook up to the Vest machine.

Bennett and "Pumpkin" model their Vests.


I love that Hill-Rom even added a tiny button on the back of the Vest.  On the real Vest, the buttons actually hold together the outer part of the vest and the inner-bladder (the part that actually blows up with air).  On the Bear's Vest, not only did they add a tiny button but they padded the back of the Vest so it sorta feels and looks like it's blown up.  Extremely cute.
Bennett and "Pumpkin" do their Vest together before bed.


Thanks to Hill-Rom, we now have an additional teaching tool and comfort to help soothe Bennett during his Vest time.  I cannot even express how thankful I am to have a toy Vest like this.  I would never be able to go to Build-A-Bear to buy this or pay someone to make this.  So, this is an invaluable gift to our family.  I look forward to "Pumpkin" joining us for Vest time for many years to come!