Home

Home.

For me, a place of comfort.  Safety.  Joy.  Security.  Nostalgia.  Stability.  Love.  Reassurance.  Calm.

Love this picture Stacey took, because this is home.  Not a building.   Not a city.  Not a two-story, five-bedroom, 3 1/2 bath structure. 

Rather, an embrace that I have shared time and time and time again with Bill.  I look at the picture and know exactly what it feels like to be there....because I've been there over and over again.  On our wedding day.  At the end of  a hard day.  To celebrate a day.  When our children were born.  During life in the NICU.  During death in the NICU.  Celebrating milestones.  Celebrating life.  Celebrating Creighton basketball victories.  Reconciling.  Forgiving.  Reassuring.  Being. 

Life hasn't always been what we've expected it to be.  Sometimes it's thrown curve balls and sometimes its given us unexpected, unmatched joy.  As a pair, sometimes Bill and I jive....and sometimes we don't.  After 14 years of having him in my life, it is still hard for me to agree to disagree....a quality I vow to improve as a New Year's resolution each year, with progress that seems to gridlock after January 2nd.  Still, this is my home.  The place that will always be my comfort.  To have and to hold from that day forward.  Till death do us part.  No matter what.

If the stars are aligning, my blog online cues my recent favorite song by Phil Phillips...Gone, Gone, Gone.  Lyrics that speak of this home, how lost I would feel without it, and the lengths I will go to in order to keep it sacred. 

When life leaves you high and dry I’ll be at your door tonight | If you need help, if you ne

he

When life leaves you high and dry
I’ll be at your door tonight
If you need help, if you need help.
I’ll shut down the city lights
I’ll lie cheat I’ll beg and bribe
To make you well, to make you well.

When enemies are at your door
I’ll carry you away from war
If you need help, if you need help.
You’re hope dangling by a string
I’ll share in your Suffering
To make you well, to make you well.

Give me reasons to believe

That you would do the same for me.

And I will do it for you, for you
Baby I’m not movin’ on
I’ll love you long after you’re gone
For you,  for you
You will never sleep alone
I’ll love you long after you go
Ooh long after you’re gone gone gone

When you fall like a statue
I’m gonna be there to catch you
Put on your feet, you on your feet
And if your well is empty
not a thing will prevent me
Tell me what you need, what do you need
I surrender honestly
You’ve always done the same for me

So I will do it
For you for you
Baby I’m not movin’ on
I’ll love you long after you’re gone
For you, for you
You will never sleep alone
I’ll love you long after you go
Ooh long after you’re gone gone gone.

You’re my backbone
You’re my cornerstone
You’re my crutch when my legs stop movin’
You’re my head start
You’re my rugged heart
You’re the pulse that I’ve always needed
Like a drum baby don’t stop beatin’
Like a drum baby don’t stop beatin’
Like a drum baby don’t stop beatin’
Like a drum my heart never stops beatin’

For you for you
Baby I’m not movin’ on
I’ll love you long after you’re gone
For you, for you
You will never sleep alone
I’ll love you long after you go.le

Like a drum baby don’t stop beatin’
Like a drum baby don’t stop beatin’
Like a drum baby don’t stop beatin’
Like a drum my heart never stops beatin’

For you. 

Baby long after you're gone. ll shu

What a Picture is Worth

 Once upon a beautiful evening in September, we splurged and had family pictures taken. 

We have oodles of fabulous pictures of the kids, documenting their progression through the years thus far.  But….professional photographic documentation of Team O’Neill….well….we sadly owned none.  As in nothing, nada, zilch.  The last time we had group shots, the girls were in diapers and Jack wasn’t even a distant dot on the horizon…and our family without Jack…well, it isn’t our family.

I met Stacy Ideus through email before I met her in person, and I loved her then.  No matter how much I perused for other photographers, I was drawn to her work more than any other; I was convinced that her creative eye and the way that her brain is formed must see the world and humanity differently than most of the average humans on earth. 

I was not disappointed when I met her in person.  Our family had SUCH a memorable time with her.  With Jack Johnson music in the background (which Camille noted has a great tempo...not too fast and not to slow) out on a farm on a beautiful sun-setty evening, we got to do what we do best as a family unit...just be...play...explore...laugh...love.  The way in which she captured the essence of our family exceeded my expectations, as did her amazing spirit and beauty as a person.

To show for it, I have oodles of amazing images to remind me that we did, one night in September, stop to smell the sunflowers and just exist as Family O'Neill, in all of our quirks and flaws and idiosyncrasies and gifts.  I have somewhere in the neighborhood of 100 beautiful images to remind me that this is the essence of life.  Not running from activity to activity.  Not our jobs.  Not doing everything perfectly.  Not stressing about schedules and tests and money.  This is the priority.  Us.  The way that she caught the just-right expressions and characteristics of my children..the way that she captured my favorite parts of them...shall be my daily reminder of how I need to work better at prioritizing my life because these moments will be gone in a heartbeat. 










Visit her at www.stacyideusphotography.com  You won't regret it.



Here is the link to our page:

Stacy's Blog on the O'Neill Fam


 

 

Photographs by Stacy Ideus Photography: www.stacyideusphotography.com

Under Reconstruction....

An Adventure with 'Roids

Jack man.  Love that guy.  Wouldn't change a thing about him...character, charm, energy, silly-willy-ness.  But, alas, the trying threes have arrived.

Threes have always proved to be more challenging to me than twos.  The twos in my house really weren't all that terrible.  There was an occasional tantrum, some inevitable "no!!"s shouted, but really, the episodes were pretty time-limited as I found that the kids were easily manipulated and/or distracted.

With the age of three comes a switch of the lightbulb in the three-year-old brain---a dawning of the realization "I can actually push this lady to see how far she will go,"  "She has buttons--pressable ones--that work to my advantage,"  and "Hey, I have stamina...and I bet I can hold out longer than she can....let's give it a try.  After all, that candy in the cupboard is worth it."

As far as boys go, Jack is a pretty sensitive guy, but in the last month or so, his 'tude has really grown.  Gone are the days of "But I want to be a good boy mommy," and here are the days of flailing on the floor at Lowe's, precisely at the moment that a judgemental older woman passes by, peeking at me over her spectacles with that "can't you possibly control your behaviorally challenged child" look. 

The past ten days...ten loooooonnnng days.. a new element was added. 

Roids.

As in steroids.

Jack snores like an old man.  A loud old man.  With a megaphone. 

It's an I-can-hear-you-through-the-wall kind of loud. 

So, long story short, he was sent to ENT to find out that he has huge adenoids and somewhat large tonsils.  The adenoids definitely need to come out, but the ENT doc thinks the tonsils will shrink enough with a steroid and antibiotics to avoid surgery.  Thus....10 days of roids. 

Wow.  I knew that steroids have many side effects, but under the influence of steroids, Jack grew a new head with long horns...pointy ones.  It has been like 10 long days of sleep deprivation combined with caffeine overdose, teething, an earache and sugar overload all at once with a P.S. of an appetite the size of a whale. 

There were moments on Thursday when Livvy and I stood outside on the sidewalk at K4J and Yo-Yo-Berri finally just laughing as we really thought his head was going to start spinning around and hurtle right off of his shoulders.  I have never seen him so desperately out-of-sorts.  And if a 3-year-old ain't happy....ain't nobody going to be happy.  Especially momma.

And here, "Seriously, Jen???" brain kicks in....

...because there are moms out there who would read this and sigh, thinking, "You have no idea.  That is a drop in the bucket." 

And I don't have any idea.  I don't know what it is like to have a child on mega-doses of steroids or other potent medications for chronic conditions or as a part of their cancer treatment. Medications that flip daily life on its backside for as long as it takes to make it better in the long run. 

I can only imagine how much bravery and tenacity it takes.

So...to Lily, a most beautiful and spunky 1st grader fighting leukemia, and her mom, Susie, both of whom I admire from afar... you have no idea how much you are heroes to those around you!  Godspeed to you, beautiful girl.  You inspire me.

Sammy's Heaven Day

Yesterday, July 22, we celebrated what Camille has come to call "Blue Balloon Day," otherwise known as Sam's Happy Heaven Day.

Bill and I have known since Sam and Hannah died in the NICU 8 years ago that we would never stop honoring their life on this earth and the special place that they hold in our family's history and in our memories and hearts.  For people peering in from the outside, their lives were excruciatingly brief, a drop in the bucket which gets more diluted as time goes on.  However, NICU life runs on a different clock. 

The ten days of Sam's life and the 24 of Hannah's seemed like numerous months, where we spent minute after minute and hour after hour at their incubator-sides, waiting intently as we got updates on their progress, talked incessantly to them, prayed, read a bunch of great books, prayed, "contained" them with our hands through the circular doors into their "spaceships," prayed, and came to know the staff like a second family.  One day alone could seem like years as we were hit with varying degrees of stability in the course of 24 hours... celebrations of improvement in lung function in the morning and increased feedings of breastmilk via NG tube by noon, only to be balanced out by signs of fever and a severe infections or even code blues by nightfall.  Never have we grieved so many little things and celebrated so many milestones in such a short amout of time, the climax of which was grieving their losses on earth while celebrating their entrances to heaven.  Never have we been forced to grow so much so quickly.  Sam and Hannah's lives changed us forever; they made us better parents and better people.  So....we owe it to them to remember them and thank them. Our lives would be profoundly different had they not been in it.

For a few years when Camille was little, we released balloons to them on their birthday, July 12.  A couple of years back, Bill and I decided that we didn't want Camille's birthday to be about honoring Sam and Hannah; we wanted to let her birthday be about her as an individual.  We decided instead to celebrate their heaven days, making it a celebration of their life here and the beautiful days they left this world, a place which proved to be too harsh for them. 

While obviously I think about them much during this time, we cetainly don't make a day of of it with the kids.  We usually take about 5 minutes to release balloons, watching them float away across the horizon.  The kids do know what the ballons are for and who they are for; we don't hide Sam and Hannah's existence.  We do mention them fondly, and like to think that they are present in our lives.  However, in our everyday life, they are not mentioned every day, sometimes not even monthly.

That is why I guess I was a bit taken by surprise this year when the following came home from school.  Camille's class was doing a unit on holidays:
















She holds them in her heart, and every once in awhile, it comes out when we least expect it.

I wonder about the mystery of multiple births, if the time in utero spent together bonds the babies in any special way.  I have heard stories of such. 

Someday, I will ask her. 

Mom's Letter to Camille

Dear Camille,


Someday, when you are older, perhaps you will read my blog. Perhaps not. I do know that my thoughts are not for you to know now, and they certainly are not for you to understand now. However, later in life, they may be a momento to you and who I was when you were young as well as who you were when you were young.


Today is the day of your 8th birthday, and it has been an extraordinarily memorable day. We spent it celebrating on vacation in the mountains, Estes Park, CO to be specific...as I know you are into specifics. Grammie and Pappie are here with us. You got to set the agenda for the day, which was PERFECT because you find agendas quite thrilling....such a planner you are. We ate breakfast in a local cafe with your usual fare of a cinnamon roll. We traveled up the Aerial Tramway and spent a couple of hours exploring at the top of the mountain feeding chipmunks and hiking a bit. After that: FUNPLEX for minigolf, bungee trampolining, super-high slides and bumper boats. You picked Bill and Tony's Pizza for supper, followed by hot-tubbing at the condo, exploring the Big Thompson River again, opening presents, and eating gourmet cupcakes. I don't think we could have filled the day any fuller, which is appropriate because that is the way you are each day of your life.


Okay, now onto the profound....because I am a thinker, you know.


I knew I was going to resurrect my blog today. I have been meaning to for awhile now, and today presented the perfect opportunity...vacation means time to blog and your birthday meant an obvious event to blog about.


I figured it would be something light and fluffy. But then, at breakfast, you had to go and leave me speechless.


As we were sitting around the breakfast table at this oooh-tooo-local cafe, you asked me, point blank, "Mom, are you happy that I was born on July 12 instead of October 23?" (The background, of course, is that October 23rd was your due date. Your birthdate, July 12, came 15 weeks too soon, bringing you into the world at a whopping 1# 13 oz.)


I sat in silence, as did everyone at the table, stunned by the question and the complexity of the answer. Today, you were only 8. I do not believe in not telling you the truth; however, I also do not believe in loading you down with information that you should be protected from by childhood innocence. So...your dad and I very truthfully answered, "Camille, we love absolutely everything about you. We would never want to change a thing about who you are."


As you grow older and undoubtedly learn more about science and the gravity of what it means to be born so very prematurely, you will come to question a few things with that extremely curious mind of yours. You will realize that had you been born on October 23rd instead of July 12, things would probably very different. In all honesty, you would not have had to fight so vehemently for your life as a baby. You would likely not have a significant visual impairment. You would not have battled glaucoma and had to have an enucleation. You wouldn't have surgeries numbering in the double-digits already. You would probably have a very normal gait and "mild cerebral palsy" would probably not be words in your medical record. You wouldn't have had to fight for every developmental milestone those first few years of life. Sam and Hannah would probably be alive on this earth.


What you NEED to know is that you would also not be the amazing person you are today. You might not have this crazy, wacky, out-of-the world IQ that you have. Your musical talent might not be what it is. This amazing curiousity that you have may not exist. You might not be the wonderful friend that you are to others, being completely non-judgemental and open to everyone else's gifts and attributes. You may not be the determined, hard-working girl that you are. You wouldn't be "bilingual" in braille and print. You wouldn't be the adaptive technology guru that you are. Your zest for life and your unwavering spirit may be lost. You may not be this amazing source of inspiration that you have become to people we know and love, as well as people whom we meet briefly in passing. You would not have two amazing angels hovering about you. You may not have Jack and Liv. You would not be YOU and because of this, I would be saddened, and the world would be missing out terribly. I am not too foolish to realize that even the smallest of events on this earth affect many other events that follow. I don't want to even envision what life would have been like if life hadn't happened as it did. There are too many variables, and we have found too many gifts in even the hard times. We have found giftedness in the way that the chips have fallen. And boy, has your life graced this world.


From the minute you were born, I could sense that you were a survivor. The vibes coming from your corner of the NICU gave the message, "I will not go down without a fight." At the same time, you were a sweet bundle of babe with charisma and an instant fan club. This is still you today, and can be yours for the rest of time.


The world is yours.


Love you to the moon and back and infinity and beyond,


Mom