Friday, May 30, 2014

The Half Birthday Girl and Why We Half Celebrate...

Today is a big day!  

We are celebrating Hope's very first "half birthday."  
Today she is six months old.  Halfway to One!!
There's something I need to tell you about this child of ours.  She has the sweetest - and I mean the sweetest - personality.  She reminds me so much of her brothers.  Ed and I agree that she has Gavin's zen demeanor.  
But she also has Brian's charm.  
She's a quiet observer - taking it all in and not wanting to miss anything that's happening around her. 
 And yet she attracts attention wherever she is - with one little pout or a big grin - she stops people in their tracks.
Hope has truly been the light for all three of us during a very dark time.  This tiny little baby has managed to forge a profound relationship with each of us in such a short time.  She has her Daddy wrapped around her finger - and she just lights up when he walks in the room.  
Brian showers her with love and kisses and whispered little secrets every single day and she thanks him with the biggest smiles and the best giggles.  
(Here's Brian at six months with his heartbeat bear!)
And I don't even know if I have the words to describe the bond I feel with this child.  The child I feel that I knew before I knew she was even a possibility.  I can't even explain it.  I can't even explain.  
We have a lot planned for Miss Hope this weekend.  We're celebrating as a family and including Gavin, as usual.  She is too little to consciously understand that she has a brother who is now in Heaven.  
But the three of us still tell her stories about him and he will continue to be a part of this family's narrative forever.  She may be too little to consciously "get it" - but we know her soul remembers and understands.
Brian and I had fun tonight pulling up his and Gavin's first "half birthday" photos.  Here are a few of Gavin's...
I like to call this one the "floating head."  My early photography work left little to be desired, I know.  Ha!  
And here are some of Brian's six month photos... 
Brian's happy, giggly, loving personality has never changed from infancy.
Half Birthdays are a big deal in our family.  I could say that it's a way to get two celebrations a year - and that would be true.  I could say it was set up in case our "winter babies" wanted a birthday party in the warmer months.  We could give them a choice when they get older when they would want their party. That reason would also be accurate.

But the real truth is - "half birthday celebrations" began with Gavin.  

When Gavin was born - we were thrown for a loop.  Our first child, we expected to be handed something right out of the Gerber baby book.  Instead, he wasn't handed to us at all.  He was whisked away to the NICU - and his life was a roller coaster from that moment on.  I learned quickly that in order to stay positive, stay focused and encourage Gavin... Ed... and even myself... I had to celebrate every little thing.  I decided to focus on the happiness... the accomplishments - no matter how small... the every day - knowing from the start that we had no idea what the future would hold.  Gavin's first six months were hard.  Really hard.  Not just for us - but for HIM!  When he was about to hit the six month mark I decided he needed a party.  That WE needed a party.  And that was the inception of our "half birthday" tradition.  It's not just a silly thing to us (although it is silly and cute!) - it's a reminder.  A reminder to celebrate our loved ones.  A reminder that nothing is promised.  A reminder to focus on the positive.  A reminder to love - big.  And an excuse to buy a birthday balloon that is bigger than a refrigerator.

Here is what I wrote in my CaringBridge journal on Gavin's six month birthday.  This might help explain how we felt back then...

Happy Half Birthday, Gavin!!
It's so hard to believe you are six months today. We kept you alive for half a year! And, most importantly, you survived some pretty tough illnesses - thank God - in a short six months. You will probably be the most photographed kid around, the most kissed and hugged by your parents, the most reminded of all you've been through until it bores you to tears. We try not to take any moment with you for granted. Every time you open your hands, every time you smile, every time you hold on to something, every time you finish a bottle, every time you lift your head up or try to turn over. We celebrate every moment because every one of those moments is huge.
I'll never forget the day you were born. I was so happy and so excited...I couldn't wait to see my little "Chirish" baby that I dreamed about for months while you were in my belly. Would you look more like Daddy and not at all like me? I remember lying behind the curtain, so helpless, not knowing what was going on and relying on your Daddy to give me a play by play. I remember not hearing you cry...not that day or the next. I remember they told me that I needed to recover from my surgery and I wouldn't be able to see you until the next day. I remember saying "Yeah, that's not happening", turned my head...threw up in a bucket, and promptly said "Let's Go". I remember not being scared the first time I saw you with all of your tubes and wires and bruises from the delivery. I just knew you were a fighter...I knew you were going to be all right. I spent every day sitting by your isolette for a month. I never took a day off. You were never far from my mind. It's amazing to me that one little boy has had to suffer so much. We tried so hard to have you...then worked so hard to save you....then prayed so hard that you would be okay. You are the most amazing little boy I've ever known. I've already learned so much from you and you are only six months. I can already imagine your potential as an adult. You have so much to give the world just from sharing your experience. We were devastated when you got sick. We felt so guilty as we tried to protect you from everything when we brought you home from the NICU. I lived by your bedside for 8 weeks. I waited a long time for you....nothing was going to tear me away at that point!! It was a good lesson - though it took a long time to realize it - that we'll never be able to protect you from everything. You'll get sick, get hurt, have your heartbroken...we wish we could protect you all the time, but we can't. That's hard.

You are blossoming before our eyes. Every day you grow stronger and braver. We're so proud of you and your progress. Today is the day we celebrate halfway to one year. But always remember that we celebrate you every day.
Happy Half Birthday, Gavin. Just you wait until your "REAL" birthday....Mommy will get even sappier!!

Happy Half Birthday, Hope.
Because of Gavin, we know to celebrate every single day.  And to love... BIG.
We love you BIG, little one!

Thursday, May 29, 2014

Brian's Medical Mystery...

Last week, after Brian's graduation from preschool, we went to one of his friend's house for a playdate!  There were a bunch of his classmates there and they were all having a great time playing while the Moms were hanging out enjoying actual conversation.  Like real grown up talking.  A novelty when you have young kids.  But, I digress.  At one point during the party I noticed Brian's cheeks were very red - my gut told me something was up, but I blew it off and told myself that he must be hot.

We got home and headed to the shower.  When I took off his clothes, I was shocked.  He was red and scaly everywhere!  His entire body.  And his skin felt like leather.  Totally bizarre.  I gave him the shower and slathered him with coconut oil, my moisturizer of choice, and decided this must be some type of allergic reaction.  Thankfully, he wasn't itchy or showing any worrisome symptoms.

Two days later, there was little to no improvement.  Actually, it was looking like it was turning into something else in addition to the rash.  He looked like he had goosebumps everywhere.  So off to the pediatrician we went.  He said we were dealing with two things - a contact allergy and Keratosis Pilaris

I racked my brain about the contact allergy.  Our friends have a dog - but Brian had never tested positive for a dog allergy.  I questioned him about what types of things his group of friends were playing that day - and I immediately thought I had an answer.  He said that they were using his friend's comforter to hide under and use like a "fort" - basically, he was rolling around on the fabric.  (My apologies to my friend!!)  I called her to ask if I could steal a sample of her laundry detergent.  I was convinced that was part of the problem.

Since Gavin, we have only ever used Dreft.  And we never have any scented products in the house.  Gavin had eczema (and Brian has patches of it, too) - and kids who have eczema can be prone to asthma.  Scented products can exacerbate both.  Gavin also had contact dermatitis.  So if you were to hold him against your shirt that you washed in Tide or All or any other detergent that was strong and scented - he would instantly break into a rash.  

I decided to make an appointment with Dr. Kang, our acupuncturist.  She is the doctor that taught me how to (successfully) eliminate Brian's peanut allergy - I knew she'd be able to help me get to the bottom of this.  If you are new here - you should know that I rarely believe anything is forever.  If it says a condition takes years to resolve - or will never go away - or that you'll need toxic medication or cremes - I just don't believe it.  I suppose that mentality comes from mothering Gavin.  I refused to believe things like "he'll never" or "he won't be able to" or "he'll probably not" for any milestone.  I always believed that Gavin would do everything.  I didn't know when - but holding onto that hope kept me positive and motivated to help him.  Along the journey, I met incredible complementary healers like Dr. Kang (Acupuncture) ... and Dr. Trish (Energy Healer) ... and Dr. Thompson (Nutrition).  When Gavin was a baby and was getting physical therapy I had a bit of a breakthrough.  I thought the therapist and the therapy was great and necessary - but I wanted to get to the root of why he needed therapy to begin with.  And I knew it started in his brain.  I had to figure out how to heal his brain. That is what led me to google which led me to research which led me to Dr. Thompson.  Over the years, she helped me slowly heal Gavin's brain (and many of his skin conditions!) through nutrition.

While waiting for Brian's appointment with Dr. Kang, I wrote to Dr. Thompson asking her for her thoughts.  She knew that this was an "inside job" too - and said that often things like this erupt when there deficiencies of Vitamin D and A.  She told me to give Cod Liver Oil to Brian - it has both D and A.  And she told me to add healthy fats to his diet.  I'm doing both - and I also added Nordic GLA to the regimen (Borage oil).  Brian is just like his brother - tough as nails.  He doesn't like the cod liver oil that much (does anyone?) but he takes it because he knows it's good for him - and it will help him.  Dr. Thompson also told me to stick with the Coconut Oil on his skin.  Sometimes I switch back and forth to Aquaphor, but she said that Aquaphor is not good for kids with Keratosis Pilaris.  Since it is "petroleum based" it can actually clog the pores and contribute to the "keratosis."

Yesterday was our standing appointment with Dr. Trish.  She treats Brian AND Hope every Wednesday afternoon.  She has been instrumental in helping Brian navigate through his grief.  Hope is a peaceful, happy baby who breastfeeds well, is rarely fussy and sleeps beautifully.  I am sure that Dr. Trish's treatments have much to do with that.  So at our appointment I told her what we were dealing with and we discussed that it really is no coincidence that Brian has been having a more difficult time with his grief recently.  (Not anything drastic or dramatic - just talking about Gavin and feeling sad more than usual)  What's going on inside your body - and with your emotions - can manifest itself physically.  

I hope you're as fascinated by this stuff as I am.  Either that or you're bored out of your mind.  I feel very grateful that I have these wonderful doctors and women to learn from.

So today was our appointment with Dr. Kang.  One of the  techniques she uses is called "muscle testing" - completely non-invasive and the results are impossible to deny.  Here's how it went down today:

I got on the table - on my back - and put my right arm straight up in the air.  She tried to push it down... but I was strong enough to keep it in the air.  Next she had me hold a sheet of my friend's fabric softener.  I kept my strength. This meant that my body was in balance - and not reacting to the fabric softener. Then I acted as a surrogate so she could test Brian through me.  He held the fabric softener and then held my left hand while Dr. Kang tried to push down my right arm.  I kept my strength.  So we knew it wasn't the fabric sheet.  Next was the laundry detergent.  She tested me first - I kept my strength.  Then Brian held the dish with the soap in one hand while he held my left hand with his other hand.  Dr. Kang pushed my arm down and I had ZERO strength.  Bingo.  Just as I suspected.  He was sensitive to the detergent.

Dr. Kang suspected that the underlying cause of all of this was an immune deficiency, so she tested him for that next.  She gave me a little vial that represented the energy of immune deficiency and I held it in my left hand while she tried to push down my right arm - I kept my strength.  Then she had Brian hold the vial - hold my hand - and, once again, I had ZERO strength.

Lots of things can cause an immune deficiency.  And an immune deficiency can trigger an allergic response.  It can be caused by food, chemicals, environmental and/ or emotional allergies.  It appears for Brian that it was a combination of emotions and chemicals.

To treat Brian, she had him lay face down on the table - holding the vial representing "immune deficiency" in his hand.  She massaged using a tapping "percussion like" technique up and down both sides of his spine and down his legs.  He LOVES this and is so cooperative.  Even taking big, dramatic deep breaths when instructed.  It's adorable.

Next, she respectfully asked him if he would prefer acupuncture (with needles) or acupressure.  He chose acupressure.
He had gone to this appointment willingly knowing that he might get acupuncture and he was okay with that.  I wanted to completely respect his boundaries around going to Dr. Kang.  Her office was the last place that we were the day that Gavin had his "incident."  We were there to discuss how I could begin to eliminate Gavin's seasonal allergies - and Brian was getting his first acupuncture treatment.  Gavin started to act funny and I cut the appointment short to take him across the street to the doctor... but when it turned out that they were at lunch I made the split second decision to take him to the emergency room.  We all know what happened after that.  *sigh*  So, if Brian didn't want to go today - I would have 100% respected that.  He likes Dr. Kang a lot - and he was fine about going.  

He turned over on his back for the acupressure - still holding the vial representing "immune deficiency" - 
and he laughed his way through the treatment.
After she was through - she re-tested him through me.  I went from having (less than) ZERO strength in my arm to complete and total strength.  She wasn't able to push my arm down at all.  Brian's body was back in balance and his immune system was no longer deficient.  Incredible.  Even Hope was impressed.  I know it doesn't look like it - but she was.  *wink*  
After that, Brian had to lay on the table holding the vial for twenty minutes.  He was so cooperative.  We talked and told stories to pass the time.
Dr. Kang came back in and told me to use the juice of freshly cut Ginger on his skin - twice a day for three days.  I am also to place the laundry detergent my friend gave me (the one Brian reacted to) in a sealed glass jar - put it in the back waistband of his pants as he lays on his belly - and massage his back the way she did.  This is the exact technique I used to eliminate his nut allergy... which I did every single day for a little less than six months to slowly desensitize his body to that allergen.  Massaging down both sides of his spine while the detergent is near his skin (but not touching him) will desensitize him to it... while also boosting his immunity.  It will also mean that Brian shouldn't have any issues when he's around other people's detergents!  Happy day!

I know this probably all sounds wacko - but trust me, it has worked for us.  Dr. Kang is incredible - and we have learned so much from her.  

She was so happy to see Hope today!
I will keep you posted with his progress - but I fully expect this issue to completely resolve!  Once it does, I'll keep him on the Cod Liver Oil and GLA - and use the Coconut Oil on his skin - because all of that is good for him anyway.  Dr. Thompson also recommended that I get him a zinc based sunscreen - and to use clothes more than sunscreen.  "Sunscreen is just chemical clothing," she told me.  I never thought of it that way.

The last week has had me in "fixer" mode - which is how I spent most of Gavin's life.  I was back to researching and alternative healing and more.  I can't help but wonder if this little hurdle that was so abruptly thrown into our world was designed for me and Brian - as part of our healing journey.

Nothing is by chance...

Tuesday, May 27, 2014


I renewed my driver's license on my 40th birthday.  I remember walking out with the license in my hand and looking down at my photo.  It wasn't the best photo of me - (are any license photos great?) - but I loved it.  I knew that I would forever look at that photo and know that I was expecting my first daughter.  In that picture, I am pregnant with Darcy.  An outsider looking at the photo wouldn't know that - it was like a little secret.

Less than a month later - I would be holding her still body in a hospital room.

Each time I looked at my license after that fateful day in May, the photo told a different story.  It didn't tell the story of anticipation and excitement.  It didn't create the same feeling of joy and gratefulness.  I would look at that photo and think, "This is one of the last photos I have of me while Darcy was alive." That little square picture (and it's tiny copy in the bottom corner) made me mad.  I had been robbed... and every time I pulled out that card it taunted me with the cruel reminder.

Four years have passed.  So much has happened since.

April 14th rolled around and it was time to, once again, renew my driver's license.

This morning, after dropping Brian off at his "former" preschool's "Camp Fun"...
...Hope and I drove to the DMV.  More than a month late, but better than never, right?

I purposely wore my "Super G" shirt - this one in the picture:
I figured if anyone asked me what "Super G" meant during the (inevitable) long wait in the DMV, I could use that opportunity to briefly talk about our organ donation experience and why it means so much to us.  You never know... that person might have been inspired to say "yes" to organ donation that day.

Finally, they called our number.  

Did you know that you are not "once an organ donor, always an organ donor?"  Each time you renew your license, you need to renew your pledge to be an organ donor.  

And did you know that if you're not an organ donor - want to be - and it's a few years until you renew your license - you're not out of luck?  Look online for how to register to become a donor in your state - or country.  Tell your family and loved ones your wishes.  Inform your doctor and pastor and friends.  You can even designate it in your living will, advance directives or will.

Did you know that you're never too young... or too old... to be a donor?  Do you have a medical condition and think you'd be ruled out?  You may not be!  The doctors will be the ones to decide.  

I pressed "yes" to agree to be an organ donor today.  I will always press "yes."

As I sat in the plastic chair in front of the screen, ready for my close up, I couldn't help but smile.  My last driver's license photo represented sadness to me because of the loss of my daughter.  The "little secret" was tarnished by her death.

This driver's license photo holds a bigger secret that can't be seen by an outsider.  Darcy's little sister, Hope, is sitting on my knee. 
 Everything means so much more this time around.  Choosing to become an organ donor means more because of Gavin's journey.  Wearing the Super G shirt proudly made me so happy because we are proud of our hero and the lives that he saved.  Holding Hope made the experience a full circle moment.

I felt... renewed.

It's never so bad - or too late - or too difficult - or too embarrassing to renew anything.

You can renew your faith in God.
You can renew your faith in people.
You can renew your marriage.
You can renew your sobriety.
You can renew your hope.
You can renew your choice to be an organ donor.
And... you can renew your driver's license.

I never dreamed a trip to the Department of Motor Vehicles could be so enlightening.  

Monday, May 26, 2014

Memorial Day Weekend...

Looking for a journal entry that is FILLED with fun, happy and AMAZING news????  
Don't look away.

I won't keep you in suspense and save the best for last.  I can't even contain my joy as I share this.  My oldest niece, Emily, and her husband, Josh, are expecting their first baby!!!  I'm going to be a Great Aunt!!
Their lucky little snow baby is due in January - and I am secretly hoping she's a she so I can hand down all of Hope's clothes!!  How perfect would that be??

Josh and Emily had a little "practice" (not that either of them need practice) with a newborn Hope at Christmastime.
When Emily was born, I was a senior in high school.  My sister, Meg, drove from New England to Pennsylvania just to attend my graduation in 1988!  I was OBSESSED with Emily.  She made me an Aunt!  I carried her around in my graduation gown showing her off to all of my friends.  Emily grew up and became a third grade teacher!  And she even spent a month as Gavin's aide in our home!  It meant so much to me that she had that month to bond with both of my children.

I never dreamed that Emily and I would be having babies around the same time - but I can absolutely envision Hope and her little second cousin growing up together.  This is just the best news ever... and I know my Dad is beaming in Heaven.

Keeping it in the family....

Emily's younger sister, Hannah, came to visit this weekend!  Hannah will be graduating from high school soon (she'll become an Aunt at the same age I did!) and will be headed off to college at the end of the summer.  She and her friend, Gabby, decided to drive from New Hampshire to Pennsylvania to spend time with Granny and visit some family, including us!
Brian and Hope were so excited to see their cousin.
The girls showered Brian with attention...
...and he had such a great time with them.  He was giggling and showing off all afternoon.
It was a great visit!  And bravo to both of them for making that long drive.  Totally impressed!!
Brian announced recently that he wanted his own garden to take care of.  He was inspired by one of the teachers at his pre-school, St. Isaac Jogues in Wayne, PA.  Miss Rose had the kids plant peas (ours is still growing and doing well!) and taught them a lot about gardening on Earth Day.  Brian hasn't stopped talking about that since.  So this weekend, we worked on gardening.

Don't get too excited.  I didn't plant a "real" garden in the ground.  We started small.  Brian spent some time looking at all the seed packets trying to decide what it was he wanted to grow!
He ended up picking out "pods" that included - well, everything.  It was right up my alley - you literally just plant the entire container in the dirt!  But first, Brian needed the equipment!  He got a pail with a spade and a rake.  He was so, so into this!!
We filled up two containers with soil...
...and then planted the pods.
He chose to plant tomatoes and cucumbers. 
 (Cross your fingers that they grow!!!)
He also chose to plant a few things inside!  Target sells these cute little container kits that come with everything you need.  Here he's showing Daddy how the soil "grows" when you add water.  (I told you this was "starting small!"  ha ha!)
Our little gardener is going to be tending to...

And Lucky Clovers!
We've had a fun and productive Memorial Day weekend!

We ended the weekend spending some time in Valley Forge Park.  Lucky for us, this park is practically in our back yard.  It was a gorgeous day to remember our fallen heroes and all that they sacrificed for our country and our individual freedoms.  Today we salute those that gave their lives - and the families that they left behind.
Happy Memorial Day!

Saturday, May 24, 2014

This is What Twenty Five Weeks Looks Like...

You would never know that our little Hopi-doo is sick.  She seems to have caught a cold, which is such a bummer.  But she's been happy and pleasant, regardless, which is another way she is just like her two older brothers.  I don't know what I did to deserve such sweet children - but boy, I sure got lucky.
I wasn't sure how this photo shoot would go since she's under the weather... so I asked Brian to help me by entertaining her.  Best idea I've had in a while.  She just adores every single thing Brian does.  If you think she looks happy and adorable in these photos - it's because she's looking at him...
This week was big for Hope!  If you didn't hear, she rolled over!!!  You can see the proof in this video...

She's also laughing a lot more... her voice is changing as she makes new sounds (and is quite pleased with herself when she does!)... and she's starting to nap during the day.  Like real naps, not cat naps or car naps.  Speaking of which, remember how I would write about Hope screaming in the car ALL. THE. TIME???  That's no longer the case.  She loves the car and if she's not asleep, she's happy to look out the window or look for her brother in the seat beside her.
Hope seems to have a similar personality to Gavin so far.  She's very mellow and a quiet observer of everything around her. 
 She also loves music!  I have been playing Gavin's favorite CDs for her during the day and it's nice to hear his favorite songs again.  Brian sings to her a lot - and it's usually one of Gavin's favorites that he picks.  I often hear him telling her "that's a Gavin song, Hope."
She really is the sweetest, easiest baby.
She's a great sleeper, too!  She goes down when Brian does - around 7pm - and is up once in the early morning (5 or 6am) to nurse and goes back to sleep until 8am or so.  Not bad!  Although secretly I don't mind waking up and sitting with her in the moonlight, as you know.
My Mom and my sisters often say they think Hope favors me.  Not all the time - she waffles back and forth with looking really Chinese... to not.  I pulled out this picture of me when I was three months old, though, and I have to say - I think they may be right!

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