"Beautiful, beautiful, beautiful, beautiful Boy"

Dear Zion,

     Happy Birthday my big three year old boy!  I can't believe it has been three whole years since I first laid eyes on your handsome little face.

     I looked back over the photos we took of you throughout this past year and was reminded of how very grateful I am for your life.  You came into this world "fighting" and strong.  You have proved every day of your life so far that you will live up to the very large and strong name that we gave you.
     You my son are the definition of a "strong willed child."  This photo shows one of your first timeouts. You were so determined not to sit down or stand on your timeout matt.  For over an hour and a half you refused to do so.  You got so tired that you began to fall asleep standing up!  Yes, my "little soldier", you are a force to be reckoned with!  However, as the year has progressed so has your compliance.  We have grown as parents in the area of discipline and you have learned to "choose your battles" a little more wisely.
As challenging as you are at times, I could not be more grateful for your strength and resolve.  I truly believe it will be one of your greatest strengths someday.  But for now, I believe that stop sign and you will have quite a few more bonding moments in your future.

     One of your most favorite people in the whole wide world is your big sister Lily.  You both have developed such a deep love for one another.  However, as you have gotten older this year you have grown much more able to get into your sisters business.  This has come with a price and it's not uncommon to have full blown "sibling rivalry" moments scattered throughout our day.  After the dust settles and kisses, hugs and apologies are dulled out you both return to being each others biggest fans.

     You are also a "Daddy's boy" through and through!  You absolutely LOVE your Dad and enjoy spending time working at your "workbench" creating things together. You look forward to your "Daddy days" (the days mommy goes to work) every week.  One of your favorite places to be is "cuddling" with your Daddy.

One of your biggest accomplishments this year is that you are fully potty trained!  It took much longer, 6 months to be exact, but success was finally yours!!!  You are so proud of yourself and love that you finally get to wear "big boy chonnies" all the time!  Mommy and Daddy are super excited to have the $80 bucks back in the monthly budget as well!


Some more fun and "firsts"....

You and "your Rah Rah"

"You so Crae Crae" (Thanks Rox)

 Our Mighty Dragon Slayer

Can you "wink like an owl hiding in a tree?" (a line from one of your favorite books)

You are so "Rock n Roll"

 You love to fly kites

 You love your BFF "Grady"

 Such a handsome little man!

 Our little "structural engineer"

 You loves you some "Nuffins"...AKA doughnuts

First time eating cotton candy! You weren't sure at first and actually threw it on the ground!

First trip to Disneyland

You had an amazing time and were such a trooper!

First time putting the star on the tree!

Always making us laugh!

     It is hard to to explain my deep love for you my son.  There are moments when I am so overwhelmed by this love it literally takes my breath away. Moments like when we are cuddling in bed on a slow Saturday morning.  I pull you close, so close that I can feel your heartbeat and smell your sweet stinky breath and I am overwhelmed by a love that I can only explain as intoxicating. 

    You are one of the most amazing gifts a mother could ask for and I am so very grateful God chose me to be your mommy.  Happy Third Birthday my "beautiful, beautiful, beautiful, beautiful boy!"

                                                                                 All my love,

                                                                                    Mommy

   

I thought we'd make it one more year...

Tonight as Lily and I snuggled in bed to read our Christmas books I looked over and saw tears welled up in her eyes.  "Mom", kids at school keep making fun of me because I still believe in Santa Claus."  "They keep saying that it's just my parents, IS THAT TRUE?"...

The moment had come.  The moment any parent that chooses to celebrate the tradition of Santa expects to eventually confront.  Mine was  tonight....and I am very sad:(

Last year she asked a couple leading questions, however, with some creativity we were able to pull it off for one more year.  Tonight I knew that was not going to be possible.  It was time...

I think my initial silence was enough.  I think in her "heart of hearts" she knew what was coming. Tears streamed down her beautiful round cheeks.  I got a book out of our book basket that told the story of Saint Nicholas and read it to her.  As I read I also prayed that God would give me the words to explain it in a way that she could understand and that would comfort her in her disappointment.  He did and the conversation we had actually went far better than I had imagined it would.

It is unfortunate that it is only days before Christmas and that the conversation could not have waited just one more year.  But for whatever reason tonight was the night.

Even as I write this I am struck by the overwhelming sense of gratitude.  As sad as that conversation was to have I am grateful for each day and each conversation I am given with my Lily girl.  My heart aches for the parents, families and children in Connecticut  that are having very different and much more difficult conversations during this holiday season.

So I will choose to remember and cherish our conversation tonight as a gift.  Another day with my precious children, another Christmas to celebrate together as a family.  God is so good and I am grateful.

 Lily at Disneyland with Santa just a few days ago!

I wish you had met them.

Dear Daddy,

     As I sit here reflecting on this day, ten years since your passing.  I am a range of emotion. Being at the Lake yesterday stirred up some pretty amazing and precious memories for me.  I will never take for granted that I was blessed with the opportunity to come along at a much different, more tolerant, patient and somewhat tenderized season of your Fatherhood.  Although, it is a very long time since I have baited a hook or cast a line, I will cherish forever the memories of spending this time with you.
    As I watched my two beautiful children play along the shore yesterday I realized that although being the "baby" of the family had so many advantages, it came with one significant disadvantage.  You never had the chance to meet two of the most incredible people I have ever met...my Lily and Zion.  I can't help but see how you would fall madly and deeply in love with these two.  I think you would see a whole lot of me in our Lily girl.  I guarantee she would be right there with you in that boat baiting your hook with night crawlers.  Our girl is not afraid to get a little worm guts on her.  She has the most tender and loving soul. Her heart and compassion for others is something I know you would admire.  I also know you would appreciate her bright mind and would love to hear of the many exciting and interesting facts she is always sharing.  Being someone who appreciated a good laugh, I know you would enjoy her vast array of "knock knock" jokes!
    Zion would be your gardening buddy.  I can just visualize him following you around the backyard watering just like the other Grandkids used to. He would also be the one hanging out in the garage with you. You would love to watch him Dad!  He loves to "tinker" just like you did. He will spend huge chunks of time working on projects at his workbench.  He bends and balances things until they are just so and them steps back with his hands on his hips and inspects them to make sure they are just right.  You would so appreciate his attention to detail.  He even throws mini fits just like you would when things don't go just right.  I'm am however grateful your talent and gift for expletives don't accompany his tantrums:)
     I am also very sad you didn't have more of a chance to get to know my Jeremy.  I know that in the time God gave you both you developed a quick and special bond.  I think you would be so proud of what he has accomplished.  I know he deeply loved and respected you and I am very grateful you were able to know him for the brief time you did.  You would especially appreciate the fact that he is most comfortable wearing your much beloved "Bibs" and they are a regular part of his wardrobe now.
      I have no idea how things work up there in Heaven.  Maybe you do know all these things and that would be pretty cool.  I can honestly say as we were leaving the Lake yesterday and I looked up in the sky and saw that Hawk circling above us, it definitely made me wonder.  Regardless of how it works here on earth I take such comfort in knowing that we will all be reunited with you someday in the presence of our Lord and oh what a celebration that will be.
                                                                                    All My Love,
                                                                                        Nanny

The "Situation Changer"

     I haven't written a blog in over a year.  I have been looking for something to inspire my writing and something today did the trick.
     Our daughter Lily has always been very strong willed.  Over the last two years, since her brothers arrival, her strong willed personality has ramped up to "super charge."  She literally challenges our every request..."but mom...," "I was just...", "It's not...".  There is rarely a time when we ask her to do something that she does not have some sort of response other than "yes Mom or yes Dad."  If you are a parent and have experienced this yourself you can relate to the exhausting nature of these verbal interactions.  Why doesn't she just do what I asked the very first time with no arguing or complaining?
     This morning I read a particularly inspiring devotional that encouraged me to have no more "Unglued Mamma mornings."  You know those mornings where you are rushed, frazzled and your children seem to be in slow motion.  Those mornings that bring out the very best in you as a parent and person ;)  I am ALL to familiar with those mornings and have been having way to many of them as of late.
      As a mother there is the all too familiar and powerful emotion known as "mother's guilt."  I have also been experiencing more than my share of it lately, in regards to my relationship with my daughter.  I so desire to do right by her.  More often than not I end up defeated having those "what have I done wrong" thoughts overcome my mind.  Today, even after my encouraging devotional and my attempts at not having an "unglued mamma morning", I still left the house frustrated and disappointed in how both my daughter and I handled the morning.
     We joined my sister-in-law and her kids at our local "cement slide park" for a picnic.  We enjoyed a good couple hours that unfortunately ended on a pretty dramatic note.  A young man playing baseball with his brother and friends was struck in the head with a hardball and lost consciousness. We ended up calling 911 and assisting the boy while we waited for the paramedics to arrive.  I do believe he will be ok but with my background in trauma nursing and the divot in his forehead I knew we should "air on the side of caution."
     The young man was taken away and we packed up our stuff and headed for our cars.  As we were walking my daughter said to me, "Mom, as soon as we get in the car I think we should pray for that boy."  "You, are absolutely right, my love", was my response.  And boy, did she.....  We got into that car and my daughter prayed the most beautiful, eloquent and mature prayer I have ever heard come out of her mouth.  It literally took my breath away.
     On the drive home I was overwhelmed by the power of the Grace of God that I have not experienced in a very long time.  As a mother, I may have failed in many areas, but God very clearly showed me in that moment, that one thing I have done right is pray FOR, WITH & AROUND my daughter.  Lily, even at 8 years old, clearly demonstrated that she believes in the power of prayer as something that can change a situation!  I was so proud of her and so humbled all at the same time.
     So will I have more "unglued mamma mornings?"...Absolutely!!!  However I will now remember this day when my daughter taught me to go straight to the SOURCE and directly to the "situation changer", Himself!
     
 

Information Overload!!

     Well, the day is winding down.  Lily is having a play date with some neighborhood friends.  Zi is about to go down for a much needed nap.  I should probably be doing and folding the mounds of laundry that have piled up in only two days.  However, as I mentioned before one way I process information is by writing.   I will now attempt to "download" all the information from todays appointment with the Hematologist that is still whirling around in my brain onto this page of our blog   What better way to make sense of all the new information we received today and update everyone all at the same time.
     We had an appointment scheduled for 10:15 this morning.  This was during Zi's regular nap time.  As you can imagine it was a bit of a challenge keeping him content, especially due to the fact the Dr. didn't come into the room until almost 11:15.  I kept perspective the entire time realizing that he could have been speaking to a child's parents that were going through something much harder than we were.  They may have had a list of questions even longer than mine.
     The Dr. spent at least 45 minutes with us, covering both Zi's diagnosis of ITP and why, based on his lab results and clinical presentation he did not believe Zion has Leukemia.  Acute ITP usually presents after a child has experienced a viral illness.  Based on the fact that Zion was sicker than a dog about 3 weeks ago after his six, (yes six all at the same time) vaccinations and viral illness that came on at the same time, it made perfect since and confirmed even further the diagnosis of ITP.   Basically, he explained ITP as "friendly fire."  When Zion's  immune system was hit with a big job to do it "went into overdrive" and the antibodies that your body usually makes to fight infection for some "unknown reason" began attacking his bodies own platelets and attaching themselves to them. Then his spleen which has the job of destroying the cells that the antibodies attach themselves to gets a bit confused and just destroys these good platelets that the antibodies are hitching a ride with figuring they are "Foreign invaders."  Yikes, "information overload," hence the title of my blog today.
     The Dr. then went on to explain all our treatment options which ranged from doing nothing to admitting him as an inpatient and giving him an IV treatment over a three day period for six hours a day.  Based on Zion's age and stage of life (a one year old learning to walk) and the possibility of getting injured and causing dangerous bleeding the Dr. did not recommend the "doing nothing" option.
     So where do we go from here.... We have chosen the least invasive route to begin with and would like you to join us in praying that this approach would work and completely cure Zion's condition.  We began heavy doses of oral Prednisone today and will taper (or decrease) his dose every 4 days based on his lab results for an initial period of 16 days. Yes, that means every four days we will be going to the lab for blood draws.  In addition Prednisone has some unpleasant side effects. We obviously are not looking forward to this but are more than willing considering what our news could have been yesterday.
     I was so concerned to give Zion his first dose today.  Normally he takes medication well but the pharmacist warned me that although it was flavored it was extremely bitter.  She encouraged me to taste a little on my finger prior to administering it to him.  Let me just say, I can sum it up in one word...NASTY!!  I prayed big time before giving it to him and God is so good.  Zion took it like a champ and actually wanted more!  He also loves to suck on Lemons... go figure!
     So that's the latest!  We are asking for prayer that Zion will respond beautifully to this first line of treatment and be completely healed! The information that I have read says that Acute ITP is curable in 80-90% of children diagnosed as early as Zion.  Praise God!  Please pray our little man falls right smack dab in the middle of that percentage!  Please also pray that he does not suffer any of the unfortunate side effects of these steroids.  We would also pray for protection from injury and infection and especially that our family remains healthy during this entire process.  One of those "unfortunate side effects" is that they are more prone to illness while on the Prednisone.
    Lastly, I want to again thank everyone for your outpouring of love, support and prayer.  Your comments are just so uplifting and have encouraged us tremendously.  We love you all and will continue to keep you posted as we navigate these "uncharted waters."

Zi Zi....always into somethin!

    

What a day!

     Today started out just like any other day.  I woke up spent my time with the Lord, walked with a friend and then came home to start the morning routine.  Today was my work day and so the morning seemed a little rushed as usual.  Zion woke up late so I didn't get my usual morning snuggle time in.  I am so grateful God allowed me a quick minute to grab up my son and cuddle him before I got ready for my day.  Still in his footies I looked down and saw some tiny pinhead sized purple spots on his right hand and lower arm.  Of course my nursing skills kicked directly in and I stripped him down to his diaper and began examining ever nook and cranny of his little naked body.  More little purple spots began popping up here and there.  With each small dot my anxiety level rose.  I am a bit of a paranoid mother and couple that with being a nurse that is exposed now to all kinds of pediatric illness and cancer and you get a recipe for disaster.  The scales tipped when he was eating breakfast and I noticed little black spots on his tongue. 
     I immediately reached for the phone and contacted the advice nurse.  I was placed on hold for a ten minute period that felt like an eternity.  There were no appointments available so I insisted the advice nurse have a Dr. Call me for a telephone consult.  She assured me that a Dr. would call me within a four hour period.  I could tell by the tone in her voice based on my description of his symptoms the concern was mutual.  
     Knowing that I needed to go to work due to my lack of sick time I put on my best poker face and went in.  On my way into work I called my prayer warriors and alerted them and asked them to spread the word. Within 15 minutes of being at work Jeremy called to tell me that the Dr. had called and wanted us to bring Zion in as soon as possible.  Confirmation once again that my mothers heart and nursing experience was speaking very loudly that this was not something to be taken lightly.  
     We arrived at the clinic and were taken back to meet the Dr. who examined Zion very thoroughly and immediately explained to us that he would be ordering STAT blood work to determine what was happening to our son.  The next few sentences that spilled from his mouth rocked Jeremy and I to our very core.  He said that based on Zion's symptoms we could be looking at one of two things...  the first being something called ITP: idiopathic thrombocytopenic purpura, a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting.  This he explained would be the best of the two scenarios due to the fact that the alternative was the possibility of Zion having Leukemia.  He explained if Zion was diagnosed with ITP it may require steroid treatment and blood transfusions but it was definitely the diagnosis we wanted to hear.  We were then instructed to go to the lab, get some lunch and return to the clinic to review his test results in person.  Ok I am a nurse but even the layperson knows reviewing labs in person  means he is expecting those labs to be abnormal and possibly bad news.  We left the clinic in absolute shock and entered a three hour period of time in our life that was the most fear filled, life flash before your eyes, sad, confusing, overwhelming, "what if"thinking, absolutely HORRIBLE time of our lives.
     The lab experience was horrid and it took two sticks and two different techs to finally get his specimen.  He was not afraid to let the whole world know that this sucked and he was not ok with what they were doing to him.  Poor little guy, already having bruising issues was left with a couple of nasty additional "war wounds" after all was said and done.
     We left the lab drove home, fed Zion and changed him out of his goofy Christmas footies, Daddy had to bring him to the clinic in, in such a rush.  As we sat at the table and talked Jeremy spoke of a thought that had been haunting him all day.  Yesterday, he signed up to participate and organized a team from the shop to shave their heads to support childhood cancer research through Saint Baldricks this coming March.  Yes, you will be hearing more about this in upcoming emails.  And, yes, Jeremy is going to shave off all of those lovely locks that I am so madly in love with.  We were just humbled by the irony of this and what we were now facing the possibility of.  Talk about hitting close to home.  I admitted, I too was having the same thoughts running through my head.  The rest of the time we cried, hugged, prayed and then set out on the journey back across town to meet with the Dr. to hear Zion's lab results.  During this drive I prayed probably harder than I have ever prayed in my entire life. Except of course when I prayed for him to survive through my pregnancy.  Boy this little boy has given my knees a real run for their money in his very short little life so far.  Anyhow, I pleaded with God "please spare my son from Cancer.  Please God I beg you!!! But God, if you can't then please give us the courage and strength to face whatever journey you will place before us."
     We are so grateful that the first words out of the Dr.'s mouth were..."Well he doesn't have Leukemia!"  The next words..."but he does have ITP."  This, as I have said to many of you..."Was the best, "shitty" news I have heard in my entire life!"  Praise God!!!  We do have some uncharted waters to face and more than likely a lot more horrid lab experiences (sometimes twice a week apparently).  However, we will take this over the alternative anytime!!  Tomorrow we will meet with a Hematologist and gain more understanding of where we go from here.  We do know he has a "VERY LOW" platelet count (which helps with blood clotting) and this is not the best combination for a one year old BOY that is learning to walk.  Yikes!  Please pray for safety and protection from injury as we try to protect our little dare devil from hurting himself! 
     We left the office and it was as if someone pushed the decompress button.  As unknown as our future looks concerning this we felt such a relief after his diagnosis.  I am so humbled by the fact that parents all over the world, on a daily basis face what we did not have to today.  They enter a Dr.'s office and hear that their beautiful child has Cancer.  They have prayed just as hard as we have and for whatever reason they got a different answer. I am overwhelmed and have a brand new perspective on those that walk through this "valley of the shadow of death."  I am just once again, simply overwhelmed by this.
     Throughout this entire experience we were receiving texts, phone calls, voicemails and Facebook posts from all of you who knew what was going on.  I can honestly say, as afraid as we were your prayers and love were felt so profoundly by the both of us.  I told my friend and Pastor that I have no idea how people get through these type of life moments and not have the support of friends, family and The Body of Christ to be praying and lifting them up.  It is the most beautiful and comforting thing to know that you are not in the trenches alone.  Thank you to everyone who has been lifting us up in prayer and sending love our way.  We ask that you continue to hold our family & specifically "Our little warrior" up as we enter this next phase of this journey.  We promise to keep you posted along the way.  Goodnight, for now..this mama needs some sleep..ZZZZ

Our little warrior taking a "swipe" at his not so happy big sister:)

Zion and Roxy playing in the sand just three days ago.  

Our family in Bodega on Monday!

Our Big First Grader!!!

Lily has officially started First Grade.  It is so hard to believe time has gone by so quickly.  It's only been four days but, "so far so good!"

The very first day of class, Jeremy and I went with her and as I was taking pictures of her at her desk  she looked up at me and said..."Ah Mom, Can't you see I have work here to be done!"  OMG, I took that as a pretty big clue that she was ready for us to get lost!  It was sooo sad and I have to admit I may have cried a tear or two on the ride home:)  She was ready...obviously more than I was.

Lily hasn't had any homework yet.  However, as you parents of school age children know, there is plenty of homework for us parents during the first week of school.  I wanted to share with you one of our assignments that I thought was such an amazing idea.  Her teacher asked us to write her (the teacher) a letter introducing our child to her.  I quote, "No one knows your child better than you do."  She encouraged us to give a brief biography, share special abilities, fears, strengths, weaknesses, as well as share our expectations of her as a teacher, our student, the school etc...

I found this assignment absolutely incredible.  I had so much fun writing about my daughter.  It really stirred me to think about who she truly was.  The teacher said the assignment would be "rewarding" and that is exactly what it was.

I have included the letter I wrote to her teacher in this blog.  I hope you enjoy learning about this pretty cool Big First Grader from her very proud Mommy's perspective.

Lily gets a big 1st Grade Hair Cut

Having a blast

Bye Bye long hair:(

Our big girl is growing up too quickly!

Still having "Bodega moments"(That's our dog that passed away) She fell asleep with his chew toy:(

First Day of School

Big 1st Grader

This is the "mom you can get lost now" look!

Letter to Lily's teacher

8/10/10

Dear Mrs. L,

     Thank you for allowing us to introduce you to our "Lily Girl!"  We appreciate this opportunity and value the fact that you have allowed us a voice.

     As you will soon find out, Lily has one of the biggest hearts of anyone we know.  She is compassionate and caring.  Lily's preschool teacher referred to her as "the heart" of their classroom.  Lily has a very tender heart and often wears that heart right on her sleeve.  They say "the apple doesn't fall far from the tree," and in our case that is an understatement.  I realized this when Lily and I were watching a touching movie together when she was around three years old.  I looked over and Lily had tears streaming down her cheeks.  I knew from that moment on she had inherited my sensitivity.

     This sensitivity is both, as you can imagine, a blessing as well as a curse at times.  It is not uncommon for Lily to get her feelings hurt easily.  Which will undoubtedly afford her ample learning experiences throughout her life time, especially at school.  She generally responds well to a quick hug and simple encouragement and tends to move on easily.  

     Lily is your typical first born to over eager, "type A"(me, not so much my husband) parents.  Yes, we were doing flash cards pretty much out of the gate and would have invested in "Your Baby Can Read" if only we could have afforded it.  We now have a seven month old son and it is hilarious to reflect and see how much we have "lightened up" with our second.  With this being said we still completely value the importance of reading to our children and have done so from the time they were both in utero.  Lily was reading by the time she was three and has become very proficient over the last year.  Our nightly routine consists of Lily choosing a book to read to her brother and then I spend time reading to the both of them.  This summer we read "The Miraculous Journey of Edward Tulane", are currently working on "The Lion the Witch and the Wardrobe" series and then plan to move on the "The Indian in the Cupboard."  

     In the last year of Lily's life she experienced a big transition from being the only child and "Queen of the Castle" for nearly six years to being a big sister for the first time.  Although she absolutely adores her brother Zion she did go through the expected jealous, where do I fit now, stage.  She is now accepting her new role quite well and is an amazing helper and one of her brothers favorite people in the whole world.

     Lily is bright and catches on quickly.  As a student in the classroom, from what I have been able to observe, she seems to stay on task the majority of the time.  However, I have also observed that when she is bored she tends to get distracted easily.  I think that Lily does best when placed in a group that is a bit more academically challenging.  Our hope is that she will "rise to the occasion" and meet these challenges as an opportunity to grow and learn.   Lily is methodical and detail oriented.  In some circles this may translate to SLOW!  Whether eating her meal, making her bed or working on her homework she generally needs a few reminders to speed up the process.  This may prove to be a challenge when trying to accomplish all that she needs to do during classroom time.  

     Lily has been recognized for her "leadership" characteristics and finds joy in helping others.  Lily tends to be responsible and well behaved in the classroom and saves her "spicy moments," as we like to call them, for home.  

      Although Lily plays soccer, our family joke is that she "shows up for the oranges at half-time."  Running is defiantly not Lily's favorite past time.  However, we recognize the value of being involved in team sports as well as the obvious health benefits it offers.   

     

     What Lily lacks athletically she makes up for with her artistic side.  Lily is an aspiring musician and has been in drum lessons since the age of five.  In fact if you ask her what she wants to be when she grows up she will tell you she is going to be a "nurse by day and a rock star by night", along with a host of other various careers.  Lily loves to create.  She often spends her free time making crafts and drawing.  

     Lily is very social and tends to be friends with both boys and girls.  It would not be uncommon to find Lily on the playground playing Star Wars with a group of boys one day and Little House on the Prairie with a group of girls the next.  

     As far as expectations for this year it is our hope that Lily will continue to thrive academically and socially.  We hope that having her as a student brings you joy. I still have such fond memories of my first grade teacher, Mrs. Miller.  We hope that Lily is one of those students that offers you a sense of reward and fulfillment when you teach her.   Thank you ahead of time for investing in our child's future.  It is with the utmost respect and gratitude that we entrust our most precious Lily into your hands for what we know will prove to be an amazing year.

Sincerely,

            DeAnna Nellist