December #2....Christmas!!!

The joy of Christmas is definitely seen in the eyes of children.  And, I am forever grateful to have 2 children here on Earth to experience the joy of the holiday.  Chris and I have had such bittersweet moments this past week....but, Mackenzie and Carson have kept us going.  Here are some pics of their Christmas celebrations.  And, indeed, there were many celebrations.

RFTS Christmas Float, Ottawa Christmas Parade!

What a great shepherd she was!!

 

 

 

GCF Christmas Program....not any great pics of the cutest sheep ever.  He knew his line, "Baa." all too well!

 

 

 Pictures with Will's trucks.

And, the fun begins...Cunningham Christmas at our house!

 

 

Making brownies on Christmas Eve.  Aren't their aprons perfect??

 

 

Couldn't get all 5 to sit still long enough for a pic.

 

Golfclubs for the boy---watch out!

 

William gave a memory book!  All parties that received them had many tears!!

 

 Big Wheel Boy!

Gotta have Max in the pictures---I have pics every year of opening presents at my parent's house with the kids, and Max is in almost all of them. Can't miss the action!!

And, tuckered out...TOO MUCH CHRISTMAS!!!

 

 

 

December....#1

I have really struggled to get my words together over the past month.  So, today, I decided that I would do a few different posts about the busy, busy month of December.

Major Event #1 this month....Carson's big Eight Pointer.
Carson and Daddy went hunting together.  I would have loved to been in the blind watching Carson.  Poor Mackenzie went with her daddy soon after and didn't see anything except the back of her eyelids!  Soon, she will get to go hunting for her doe during extended season.

 

 

Major Event #2 this month....Carson's Christmas Program at Apple Garden. 

Preschool programs are such a delight to watch.  The innocence and joy in the kiddos' eyes is priceless.  Carson was all about hamming it up.  Once again, he puts the ham in CunningHAM!

 

 

Major Event #3....Christmas Festivities Begin at the Ottawa Fire Department.

My hubby volunteers with the Ottawa Fire Department.  But, you would never know that he is a volunteer rather than one of their full-time guys.  The OFD boys treat him like he is one of them.  And, they treat our family the same way.  This year, we came to see the brotherhood in new light with the passing of our William.  Many of the OFD boys served as honorary casketbearers and provided a service that a fallen firefighter receives when they pass.  Our William was ushered to his final resting place with OFD holding him steady in our firetruck.  And, because of the bond, the kids and I went to the OFD Christmas Party.  Poor Chris (and my brother) had to make an emergency trip to North Dakota to pick up a broken truck of ours.  So, Chris missed Santa and the OFD antics! 

Fireman Chris is a hero at our house!!  Just ask Carson!

GNO

Girls Night Out....very few people are lucky enough to live close to so many friends from preschool through high school (some even went to college with me) but I do.  In fact, I am the odd man out who lives far away from the rest.  Okay, maybe, an hour is not far away but sometimes it seems far away.  And, other times, it seems like they are next door.  This week, I can say that they all must live next door. 

I went out to dinner with Megan and Kodi.  And, they shared all my GNO friends' love for my family and me.  Throughout the past year, so many friends near and far have made my day.  But, these girls never fail!  They call, write, invite me out (even when they know that I can't go, but they still invite) and the list goes on and on. 

I knocked on Meg's door which was a bit of a shocker to her.  And, the night began.  Megan, Kodi, and I piled into Megan's Explorer with her behind the wheel.  I promised to not talk about her driving, so I won't!  Kodi and I navigated to 119th and Blackbob from Megan's house (and we didn't even need her fancy, schmanzy GPS).  Being in the car with them felt so normal.  And, man, normal felt so good on Tuesday after going over Will's autopsy.  I was afraid that I would be too emotionally drained to enjoy the evening--but I was not at all.  After all, I left CMH with a sense of wonder about my William.  He was an inspiration to all who had the joy of knowing him.  And, I deserved to be happy, too!  Dinner was great.  The socialization was fabulous.  But, the thoughts of my dear GNO friends were amazing to me.  The GNO group had a beautiful necklace made for me.

And, they know how much my kiddos and hubby mean to me.  These girls know ME.  They know that I am a mom and wife.  They know that sharing all my time is hard but that I LOVE to spend the most with my hubby and kiddos.  So, GREAT WOLF LODGE...HERE WE COME!!!

GNO CREW--I LOVE YOU.  And, thanks for loving me so much.  I can't wait to have many more memories with such a great crew.  We will make an awesome Red-Hatter's Club in 30 more years!!!!

Just in case, you all haven't been to SPIN Pizza--GO!  It was a great meal for a pretty reasonable price and a great atmosphere to do what all girls do together...TALK and GOSSIP, just a little.  (Molly, the gossip always seems to be less when you are absent...hmmm???)

Another week down....

 

Friday is here---and, we made it another week.  I was worried that this would be a week that I would stumble and fall.  But, in fact, it was far from this.  Going to Children's Mercy Hospital stirs all kinds of emotions.  Good and bad all wrapped together!!!

On Tuesday, Chris and I had an appointment with Dr. O'Brien and Dr. Shah as well as Dee, Will's social worker.  Going over an autopsy with parents has to be one of the most difficult parts of their jobs....and as parents, it was one of the hardest things we ever will have to do.  While driving downtown, I struggled with nerves while Chris remained cool as a cucumber.  He was aware of what we were doing, but he was ready to hear what was going to be said.  I was so jealous of his calmness!!!!  The meeting with William's doctors could not have gone better.  Will was truly our strong-willed warrior.  All cards in the deck were stacked against our babe!  And, we were and will continue to BLESSED by the little red head that we call son. 

My mom told me that she was so proud of us for making the decision to have an autopsy done.  Not having an autopsy of Will's heart and lungs ever crossed our minds.  I am a nurse who always wants to learn more as well as teach someone else.  And, Chris is a carpenter.  He puts together all kinds of puzzles everyday--analyzing piece by piece and how they all will fit together.  And, then he puts into action all the pieces to make a masterpiece.  (If you have seen my driveway, it's a masterpiece of concrete work!!) 

We wanted to know what went terribly wrong on September 22nd as much as the hospital staff did.  But, we also needed to know that Will's life would live on in our minds forever as well as teach so many more people.  And, once again, William succeeded.  I have heard that each child is one in a million--that there is no one just like another, similar yes but the same no.  Maybe elements of the others melt together but each varies....well, William Howard definitely did just this.  He didn't look exactly like either Mackenzie or Carson, and he definitely broke the medical mold!  TAPVR in itself is rare 1 in 15-20,000 babies are born with it, and less than 1/3 of those TAPVR kiddos have his infracardiac, infradiaphragmatic kind.  So...RARE BIRD!  But, even more RARE was the fact that he had another disease process as well.  Pulmonary Venous Obstructive Disease--meaning that his pulmonary veins were small to begin with and continued to narrow from his chronic pulmonary hypertension.   So, RARE meets RARE. 

Having both major cardiac disease processes is truly RARE.  Dr. O'Brien has had 3 kids out of 3500 (in 11 years at CMH) with PVOD and 1 of which also had TAPVR.  And, Dr. Shah has had 1 other patient in his career with PVOD.  The diagnosis of PVOD is not-compatible with life for any length of time.  The disease progresses until the pulmonary veins are so narrow that they can no longer bring the blood back to the heart.  Think McDonald's straw getting down to the size of a coffee stirrer.  The lungs fill up with fluid with no place to go except back to the right side of the heart--and then back to the body. 

So, our four months were an AMAZING MIRACLE.....and his name was William Howard Cunningham.  All parents think that their child is a miracle from God, and they are all miracles.  But, my baby boy might just take the cake (even if he didn't ever get to eat the cake!)

It has been said over and over again that "Burying your child is not the natural order."  And, no it isn't.  But, sometimes it happens.  I wouldn't trade a minute with my boy knowing now what I know.  He was a joy and what a beauty that we were able to bond with him.  But, he is ALL better in HEAVEN.  And, that alone, makes this mommy smile!!

Thank yous....

I have been trying to compile all my thank you letters and cards that need to be mailed out to friends, family, and community members.  But, I have struggled to get it all done.  I know that time is an issue but really the issue is that "I JUST DON'T WANNA DO IT."  I know you all are hearing me in a two year old whiny voice saying this.  Sometimes, as adults, there are so many things that we just don't wanna do but have to.  And, writing these cards and letters out is one of them.  I just don't want to have that final thing done.  William was so much more than I can write in words.  So, if you have yet to receive a thank you, I am so sorry.  I am working at it.

But, I can write out some of the many, many things that have touched my soul.  These are in no particular order just listed out.  And, if I have forgotten someone or something, my brain is mush!

My mom and dad....cause no matter what, one always needs their mommy and daddy sometimes (and their shoulders to cry on or the ears to hear your story when you can't hug them from Ottawa)

My in-laws....lending me an extra shoulder to cry on (and for Chris to have your shoulders to lean on and ears to hear his tales)

Brothers and Sisters (and in-laws)...loving us and never being afraid to say it and more importantly to show your love for the Five of Us.  And, for the amazing fundraiser on Will's behalf.  Thank you to Josh (and Amanda), Andrea (and Mike), Donnie (and Karen), Amy (and Justin).

A fellow church member and friend who served as the funeral director for William's service.  Knowing that my baby was in your hands, Eric, made my heart hurt a little less.  You are awesome at what you do....a true calling, just as my job is my calling.

A letter from someone I went to high school with about the loss of her newborn baby this past Summer...it was just what I needed.  Thank you, Tricia.  I definitely cried when I read it, but I also felt so connected.  Our stories are different but the loss is the same.

Hair interventions for all of us...cuts, color, styles, etc.  Jamie rocks!!

The many stories of those we know that have lost a child.  The tales are healing for both parties, us on the receiving end and them on the giving end.  Keep telling your stories.  They make us feel like we are not alone.  And, we continue to tell William's story everyday.

A message on Facebook from a high school classmate that has turned into a great friendship through correspondence even though she lives in Olathe (less than 25 miles away...and works in Paola also 20 miles away).  Thank you, Beth!

A card in the mail reminding me that I am strong when I feel the weakest.  And, the reassurance that one can be beautiful in other's eyes when they don't feel so beautiful.  Kirstin...I needed it this week

Calls daily.  Texts daily from my nearest and dearest friends.  EVERYONE.

Ronald McDonald House.

Friends taking me to dinner when I didn't want to get away but needed to do so.  And, the insistence that we do it again.  SOON--this week, in fact!!!  Megan, Kodi, Miranda, Molly...I need mommy time and thanks for making me take it!

Friends caring for our animals at a moment's notice.  Bowers, Browns, Wolzens, Wingerts, etc.

Ottawa....the community, Fire Department, Police Department, Ransom Memorial Hospital.

Other churches in the area...supporting William's Pancake Feed, bringing us an entire Thanksgiving dinner this week just to show love.

Friends shopping for my kiddos when I didn't feel like going to the store....Thank you Robbie and Miranda.

Nurses, Respiratory Therapists, and Doctors at Children's Mercy Hospital.....Garrett, Lori Ray, Lori, Scott, Lauren, Annie, Greg, Jessica, Kalli, Jackie, Teresa, John, Dr. O'Brien, Dr. Shah, Dr. Tieves, Dr. Allen, Dr. Vaughn, Dr. Bingler, etc!!!

Kids Say the Darndest Things!

There are so many funny things that kids say on a daily basis.  But, Chris and I spent this Thanksgiving morning remembering our favorite ones of our three kiddos.  And, they leave me with so many thankful thoughts.  Life with children is a dream come true.  And, the fun never stops...as I write this Chris, Mackenzie, and Carson are wrestling with each other in our bed.

Top Ten Cunningham Quotes by Mackenzie and Carson!!

10. "You are nothing but a BULLY."  Carson, age 2 and continues almost daily as he wrestles with Chris.

9. "Carson, that is just P THETIC." Mackenzie, age 3, to her crying baby brother, Carson.

8. "Why do boys underwear have pockets in them?" Mackenzie, age 2, as she reaches to see what is inside her daddy's underwear....a quick dash to the left for Chris.

7. "Mom just threw everything up!"  Mackenzie on the night that my feeding tube was thrown up...Chris didn't believe what EVERYTHING meant.

6. "Are we back at William's House?"  Carson, age almost 3, as we returned to Children's Mercy one evening.....sad, but it was oh so true!

5. "Jesus works for us.  How do you mail a paycheck to Heaven?"  Mackenzie, age 6, as she was helping me with payroll....And, a Jesus did work for us at the time.

4. "Grandma threw our Christmas tree away.  We need to hide our new one, maybe in the bathroom or bedroom."  Carson, age 3, remembering how Grandma Joyce took last year's tree down in pieces and threw it out the back door.

3. "That's not such a good idea."  Mackenzie, age 3 and on on....she is always the rational one.

2. "Are we there yet?  Are we almost to Garrett's House?" as we drive past the Wal-Mart DC...not even out of Franklin County yet!!

1. "You have a big ouchie from your heart, I probably not wrestle with you for a LONG time." Carson, almost 3, talking to William on the first day that he saw him after his first heart surgery. 

I can't wait to witness my boys wrestle in Heaven in approx. 100 years....I bet it will be a wrestling match of epic proportions....and my hubby is likely to be wrestling with his brother at the same time....BOYS WILL BE BOYS!!!

AND......THE BONUS ONE....."IT'S JUST WILLIAM AND WE DON'T REALLY KNOW."  "RARE!"  Medical quotes on our precious red-headed angel!!

November..

A month of Thanksgiving...
I decided not to do daily Thanksgiving posts on Facebook for so many reasons...but, mainly the fact that I so thankful for so many things/people.  This year has taught me so much about myself and the good of so many people.  Instead of a daily post...I think I will plan on a few TOP TEN lists for the various parts of my life.  First comes FAMILY.

TOP TEN:

1) My God for being such a wonderful and loving Father even though I don't deserve Your Love.

2) My Husband....you make my day brighter each and every day.  And, I could not ever dream of a better person to spend my life with each day.  Thank you!!  (even if you do hog the bed!)

 



3) Mackenzie Renee...you are the best daughter.  You make me smile and remember how blessed I am as a mother.  You are so intelligent, sweet, kind, and compassionate.  And, your sass is just my style.

And, you are so beautiful.  What an angelic little face!!



 





4) Carson Scott...you are an amazing little boy that I get to call SON.  You are the happiest of little men.  I love the fact that you can make anyone smile with just a little grin or joke.  You are my loving little boy who will fight his daddy for "My Lady".  I love the fight in you, my tiny might!

Ornery and Cute all wrapped into one sweet little boy!

 

5) William Howard...you will always be my strong-willed warrior.  I am truly blessed to have such a fighter as my son.  I know our time on Earth was much too short, but I have your spirit in my heart everyday.  And, I have the reassurance that we will meet again.  Thank you for fighting so hard in a fight that you were not meant to win.  But, you gave it your all and showed your family how to fight hard at all times.

I found this video about 2 weeks ago....just makes me smile.  This was on the day before he went to Heaven.  Just a short mommy moment...but one that will live forever in our hearts!!

 

6) My Parents...you amaze me each and everyday.  Almost 40 years of marriage, 2 adult children (who I would like to think turned out okay), 6 grandchildren (all of which are perfect in their own ways).  I love you both so much.  Thank you for teaching me all about life and showing me how to love unconditionally as you both do.

 

7) My brother...Josh, you are an awesome big brother.  We fought like crazy as kids but would fight to the ends of the earth for each other.  I love you so much.  This year has shown me how much I love and admire you.  And, that no matter what, we have each other just to hold each other up when we need it.  Thank you.

 

8) My In-Laws...thanks for raising such an amazing son.  And, more importantly, thanks for letting me take him off your hands.  You should be so proud of your children and the adults they have all become.  Thank you for supporting our family through thick and thin.

 

9) My Church Family...Grace Community Fellowship is a family like I have never experienced before.  The love of so many church members has been so abundant this year.  From dinners delivered when I couldn't cook, cards, phone calls, hugs, prayers, cookies on the doorstep or delivered by hand, yard/pet care, and so on and on.  Thank you all GCF!!!

 

10)My friends...because old and new, you all are Family to us.  Family is not defined by birth.  I have learned so much about the need for true friendships in the last year.  More than ever before, I have learned to rely on friends.  Thank you all for being so amazing....calling me when I couldn't call, sending me cards, letters, rekindling an old friendship (even ones that weren't strong before, but now are undeniable), and so on and on.

 

 

 

Fire....Fire....Fire!!!

Call 911.....there's a house on fire in the 800 Block of Poplar.

Halloween was a flaming, roaring, good time for Mackenzie.  The only down side was the lack of costume contest at OU this year.  She was determined to win.  But, a kind gentleman in the parking lot declared her the winner when we left the event....so, all was well!!

 

She was the "hottest" costume I saw around town....even though Halloween costumes get more risque the older I get! Don't even want to think about how little people might try to wear when I am 95 years old! 

 

 

Fireman 728 to the rescue!!!  (with his own fire extinguisher or bucket)

Isn't he the cutest fireman?  I have the best looking fire crew in my house---Chris and Carson!!

 

 

 

Man....this was a raging fire.  Despite the cute fireman and his extinguisher, the fire kept burning all night.  The house tried to set Ottawa University aflame at the Spooktacular Bash.  Lucky for the Mabee Center, the fire seemed to be contained to the one house with legs!!

 

 

People kept thinking that I came up with their costume ideas, but I did not.  Mackenzie was the mastermind.  She came up with the plans in August when we began the Halloween discussion.  Grandma Sue is the seamstress for all costumes, so we needed ample time for planning with 3 kiddos needing costumes.  No real sewing this year--just constructing a house for Grandma Sue and Mackenzie and altering a firesuit! Thanks to Costco and the cute fireman costume.

 

Carson was bound and determined to be a fireman.  Kenzie ran with the idea of a "FIRE" theme.  She wanted to be the house on fire, Carson the fireman, and Will was to be the fire dog, a dalmatian.  And, there's no doubt he would have been the cutest dalmatian.  But, instead he was called Home before Halloween.  So, instead, he was present in Spirit.  And, Carson asked God last night in his prayers, "Did William get good baby candy when he went dressed up as my fire dog?"  I asked what baby candy was and he replied, "Puffs like babies eat in their highchairs!"  And, then I smiled knowing that God provided William with the perfect Halloween.  And, most importantly, He provided my family with the perfect Halloween once again. 

 

There is never a day that William is not on my mind and filling my heart, but it makes me so happy to see my other kiddos happy.  It also warms this mommy's heart to know that William is never far from Mackenzie and Carson's hearts.  They both were determined to have the fire dog present at all Halloween events--we carried a stuffed animal to Trunk or Treating at church.  And, I carried a little toy dog in my coat pocket last night!

 

 



 



 

Wedding Vows.

Yesterday, Chris and I attended the wedding of one of my absolute nearest and dearest friends...the closest girl I ever had to a little sister, Miranda! (Nikki, you are the closest thing to an older sister!!)

While listening to the vows, I began to get a knot in my throat and tear up.  Chris and I married on August 30, 2003 on the ABSOLUTE rainiest day I can honestly ever remember (think 7 inches of rain in about 36 hours).  Our love story is pretty boring but our life is anything but boring....THE CRAZY LIFE OF THE CUNNINGHAMS IS ALL TOO FITTING!!!

We started dating after I turned him down three times, yes you read it right, THREE times!  And, ironically, one of the three times was because Miranda was in love with him, and I couldn't bear to break her heart by going out on a date with Chris.  But, I eventually caved and never looked back.  And, obviously Miranda moved on to meet RJ!  And, once I went out one time, I was hooked.  Don't tell Chris that it was that easy!!  But, we made it dating while I was away at Wichita State and then endured nursing school at KU.  And, then we were married on the most rainy day! 
                                               INSERT WEDDING PIC HERE....can't find a digital version.

Then, the honeymoon from HELL---Montezuma's Revenge of the worst kind.  And, no, we did not drink the water.  Graduate School....man, Chris was a patient guy.  Working full-time and going to grad school part-time with clinicals was so time consuming.  Grad school DONE....and here comes Miss Mackenzie Renee. 

And, then the house project that we started before we were even married took over a whole new life of it's own.  And, in 2009, the house was FINISHED!!!

So, here comes Carson Scott. 

New jobs for both of us soon followed and a company that we started in 2005 becomes a full-time gig.  And, then Baby C #3 comes along....and boy did he come along, pregnancy of all pregnancies to the 4 1/2 months of pure joy and sorrow all wrapped into our William Howard!

Yet, through all of this ride with Chris, I still feel a deep love.  And, after listening to the vows yesterday, I realize that with time they begin to mean soooo much more.  Never in my wildest dreams did I think for richer or poorer would be my life (try a house project or owning a business or a three million dollar baby)  or that in sickness or health would be my life (pregnancy x 3, congenital heart defect in one of our children, losing a child, grandparents, aunts/uncles, cousins).  But the vows stand true for us, we love each other more each day.   I admire my husband and I know he admires me.

At the wedding reception, the DJ had a dance for all married couples.  And, during the dance, he called out time intervals for how long couples were married.  When your interval was called, you had to stop dancing.  We made it to the 5-10 year interval.  But, my parents made it to the 35-40 year interval....WOW (40 years this coming March)!  Surprisingly, not many more couples were still dancing.  I was honored to see this celebration.....and, proud of my parents.  Chris's parents have also been married 32+ years.  What examples we have in our lives.  And, we look forward to being the same examples in our children's lives.

A new normal????

Our life is different now.  Our family of five is still a family of five but missing a key element.  Last night, Chris and I took the kids to eat at Guy and Mae's.  Delish!  But, on the drive home, it hit that while our time with the other kids is so great, we still feel empty.  I know that these moments will continue to arise FOREVER.  But, they are so strong right now!!  There are many moments when life is going just as it should but many moments when loss hits home.  William is in our hearts and on our minds continuously.

We have all adjusted back into our routine of things.  Chris is working full-time.  And, for once, he poured concrete on the campus of Ottawa University.  I could actually see him at work from my kitchen table!!  First time EVER!! 

My cowgirl wears boots whenever given the chance!

 

Mackenzie is in full swing of first grade.  She is loving her reading time and time on the computer.  She is quite savvy at YouTube videos.  Just in case you are all wondering, there are A LOT of horse videos on You Tube. 

Carson is loving Apple Garden.  This week alone he went to the pumpkin patch and had a Harvest Party, where the most exciting element was feeling the "guts" of a pumpkin.  I know that it must have been a classmate teaching him those great words.  I don't exactly see Ms. Lisa or Ms. Kari saying the "guts" of the pumpkin. 

And, I returned to work three days last week and likely will do three days again this week.  I work at an amazing place that is so understanding of my need to grieve and regroup.  I was pretty darn busy in clinic last week which helped take my mind off of what I have gone through in the last year.  My house is almost becoming mine again.  For those that remember, I was a "little" sick with pregnancy.  So, many different family members and friends have helped out at our house for the last year.  While I couldn't have survived without help, I need to feel empowered again. 

So, OPERATION HOUSE TAKEOVER HAS BEGUN!  Cleaning, cleaning, cleaning.  Organizing, organizing, organizing.  And, a lot of disposing!

Tera....this is for you!  I actually bought a new purse and threw the other out!

The purse is only one of many things that found themselves in FILE 13.

Dreams!!!

There are no perfect words to say to a parent who has lost a child....it just isn't the natural order of life.  So, words may seem awkward.  But, they mean everything to that family going through tragedy.  A simple "I am sorry" is good enough.  Just say something. 

Before William's passing, I would have struggled to say the "right" thing.  But, I now know that there is no "right" thing.  It isn't fair.  But, we were never guaranteed fairness.  William's story has taught us so much about fairness.  My baby never got to enjoy our home (2 weeks was fabulous but not long enough) yet he never cared.  His life was just as it should be in his mind....why do we as adults struggle with needing more than we are given?  William was dealt a bad hand but never a day passed that it bothered him.  He may not have know any different.  We know how things should go/be, and we are all guilty of throwing fits/tantrums when we don't get our way.  Our way is not the only way!!!

When you envision your future and your future family.....
HUSBAND/WIFE.....check
Career.....check
1st child..... MACKENZIE RENEE.......check
House of my dreams....that we remodeled......check
2nd child.....CARSON SCOTT.......check
3rd child......WILLIAM HOWARD.....check

Chris and I are blessed to be the parents of 3 amazing children. Mackenzie, our first born, is a sweet, methodical girl with a CRAZY passion for horses. Carson, our second born, has the most contagious smile and belly laugh. And, William, our third born and precious angel, showed more strength in 4 1/2 short months and brought more people together as a community and family than imaginable. Because of William, this blog has had 15,000+ page views. AMAZING!!

But, what happens when those dreams vary?  We had 3 beautiful children here on earth, but now we have 2 beautiful children on earth and 1 baby watching from Heaven.  How do you pick up the pieces and move on?  Well, moving on is not in my plans.  I am not going to forget Will's legacy--we are moving a different direction but not ON!  We have heard from many parents who have suffered the tragic death of a child, and the consensus is that you never move on just adapt and develop new dreams and goals.  Our thinking caps are on....but, the dreams and goals are still days/weeks/years away. 

An angel named William is waiting to tell his mommy and daddy what's next on our agenda.  Godspeed, Little Man, Sweet Dreams!  And, I look forward to hearing what you have in store for mommy, daddy, sissy, and bubby!  We love you to the moon and back!!

Milk Lady!!

I know I have talked about my life of pumping breastmilk for William since May, but I have never shown any pics of the milk!  And, there was lots of it left over after William passed away.  As a mom with a sick baby, there are so many things out of your control.  But, providing milk for him was in my control.  I relished this control and ran with it.

A chest freezer completely full of milk!



After William went to Heaven, we were left with the question....What are you planning to do with ALL of the milk?  Rushing into a decision seemed wrong, but the milk only lasts for so long in the freezer.  Plus, a baby could benefit from my milk immediately.  So, we gathered the milk from Ronnie's House (well, my in-laws did the gathering) and Children's Mercy Hospital and took it Great-Grandpa's Milk Bank (AKA his deep freeze that had an abundance of milk from the first hospital stay).  Called St. Luke's Human Milk Bank.  But, they could only use my milk for RESEARCH!  The comment was made that it was not okay for other human consumption besides my own child.  Because, I drank caffeine and took an anti-depressant.  Come on, it was good enough for my precious Will but not for any other baby.  Caffeine and Celexa may have been the only way this mom made it through the last 5 months!!!  The thought of Will's milk going only to research made me cringe.  I worked hard for that milk and a baby needed it.  

So, I put the feelers out and received word that 2 babies that I will get to see thrive are going to take it!  Sad as it was to see it go, I am so glad to see Will's milk feed 2 babies!  Audrey and Zachary are receiving Angel Kisses from my boy as they drink his milk.  Audrey needs a digestive system boost---what better way than breastmilk and angel kisses.  And, Zachary needs more milk on the days his mommy must work.  Being a full-time working mom myself, I know that it is hard to keep the dairy barn in full working order when you return to work.  I struggled to provide enough for Mackenzie and Carson when I returned to work.  Providing supplemental milk for Zachary is just perfect!

Zachary's box of milk

My freezer at home is bare--Great Grandpa's still has LOTS of milk available for these 2 precious babies.  And, it was a little hard to swallow and tear provoking as I handed milk out--just another reminder that William went Home just not to my home!  BUT, my ETERNAL HOME where he will wait for his mommy and daddy!  And, where is playing with our family that has passed before us.  I am sure the red-headed blue eyed boy is getting doted on every minute of every day!!

Darkest of Days

Not exactly sure how this blog should go or be written.  But, I am trying to write it to the best of my ability despite the deep sadness that may permeate through my writings.

My last photo of our boy taken on September 21, 2012. Will figured out how to stick his tongue out.  We sent this pic to Daddy!

 

On Saturday, September 22, 2012 at 1832pm (yes, i think of time in a military style, too many days spent in the medical field), our world came crashing down.  Our sweet baby, William, checked into the pearly gates of Heaven.  St. Peter opened the gates as he saw William coming his way.  And, in my heart of hearts, I know that our family that has passed was waiting with open arms.  They were all anxious to rock my baby and tell him that they would take care of him until the day comes that he gets to wait at the Pearly Gates for his mommy and daddy to come Home.

William fought the fight of all fights in 4 1/2 short months.  Every day was a struggle to breathe, yet he never let us know how much pain/suffering he endured.  He was our precious third baby, perfect in every way.  Bright blue eyes, red-hair (with the temper, too!), long fingers and toes, small petite beautiful mouth, two small teeth (just breaking through), a perfect smile, a zipper on his chest, a tiny hiny (as his nurse Laurie called it).  He was our perfect Skinny Mini.  And, for all of these features, we are forever grateful to our God for sharing his Prince William with us.  Thank you God for William.  We will always wonder why his time with us was so short, but we know that You have great plans for your child.  Give our baby boy love daily just as we did everyday in the last 4 1/2 months.  There was not a day that either his mom or dad did not spend some time with him.  And, God, please watch over his big brother and sister as they grieve for their lost time with William.

Will and Monkey in deep conversation on September 20, 2012.

Since this life changing moment in time, when our world stood still, so many things have been done.  The number of decisions that must be made immediately following a death is beyond reason.  And, the time frame in which it all must be done is unbelievable.  I could list all of the behind the scene things that a grieving family must do to prepare for the saddest of days, but the list seems to be ever changing in importance and order.  But, we are making it.  By the Grace of our Gracious and Loving Father, our family, and our friends we are surviving.  Minute by Minute, Hour by Hour, which then turns to Day by Day.

When a family member or loved one passes away, sorry doesn't seem to cut it.  But, let me tell you all that sorry is good enough.  There are no appropriate words when a baby dies too soon.  But, knowing that we as parents are not alone is healing.  Having people stop by, bring food, phone,write letters or messages, send text messages, hug, etc. has made each day just a smidge better.  And, the next few days are going to be the hardest yet.  So, say a prayer for our grieving family, call us, write a letter, send a text, etc in the coming days and weeks.  The Cunninghams are going to need it.

A Family of Five!!!

Strong Willed Warrior

The other day, I began to wonder what my children's names meant....it has been a while since I looked them up in a baby book (or online).  So, I did my research (google style).

Mackenzie:  Son of Kenneth (not sure how this fits my girl, but oh well)  The name fits her, I guess.
Carson: Christian (similar to Christopher in name)  Interesting, huh?
William: Strong willed Warrior.  Could not have said it better myself

MY FAVORITE PIC TO DATE!!!

It has been a little while since I posted much of an update on our precious boy.  William remains in the Pediatric Intensive Care Unit at Children's Mercy.  It has been a long 4 months and 1 1/2 weeks!   But, Will remains a strong little man.  He continues to fight an uphill battle.  Yesterday, Chris and I met Cardiologist #10 of 15.  And, she reinforced how rare and serious his condition is to begin with and how seriously ill William is as a result of TAPVR with pulmonary vein stenosis.  Many (of the few, few babies) born with his defect do not make it to the initial surgery, don't get to go home, don't make it to the cath lab twice, don't have a second chance at open heart surgery, and our William has defeated the odds.  But, he remains a sick little boy.  His right sided heart pressures are extremely high from the back flow in the lungs as a result of the pulmonary veins being too small.  William has continued to struggle with increasing pulmonary edema and work of breathing.  He has gone from needing high flow nasal cannula to intermittent BIPAP to continuous BIVENT and CIPAP to support him from a respiratory standpoint.  And, these needs aren't going away.  He will continue to struggle to breathe and grow by working so hard all the time.  He has gotten longer and gained very little weight--still under 8lbs and he's 4 months old!  Every calorie he is given is directed for breathing and heart function, so growing has been pushed aside.  The body prioritizes from Day 1.  In order for his pulmonary veins to have a chance at growth, WILLIAM MUST GROW! 

CIPAP mask--he actually likes it!

 

Got to go to a nasal cannula for his first photo shoot today--Child Life had a photographer come take pics for us.  We have amazing photographers who want to take Will's pictures, but scheduling them before our next adventure seemed impossible.  So, we will hold those tickets for the future!!  Pics to come in the next few days!!

We have given food, water, and a little sunlight (via a second story window!) but not much growth.  And, not because there's been a drought in the area is Will not growing.  There is no drought where his milk comes from!!!  How does one get a baby to grow when they are on the highest calorie count that can he can consume and still isn't gaining?  They take the work away from him--meaning that he will need respiratory support to ease his work of breathing and therefore, decrease the effort on the body.  So, late this week or early next week, William is going to have yet another surgery.  This one is for a tracheostomy and gastrostomy.  William is going to have a trach placed for ventilator support of breathing.  The goal is that this will rest his body so that GROWTH can happen.  But, with a trach, one must continue tube feeds.  So, a G-tube will be placed as well.  SCARY STUFF! 

My perfect looking boy will be perfect in a new way in a week or so.  And, GROWTH will begin!  If he can demonstrate growth over time in the PICU then we will come home on a ventilator, apnea monitor, and tube feeds.  Good thing, we bought the Expedition in January--Will is going to have lots of paraphenalia.  The learning process for this mom and dad is just beginning.  Keep our strong-willed warrior in your prayers as he undergoes yet another surgical procedure.  And, keep us all in your prayers as we embark on a new adventure.  We often state that William is the captain of the ship and we are all just passengers (Chris and I as well as his entire medical team--and that is A LOT of people.....growing by the day!!!)