Sunday, December 29, 2013

Photo Dump


Porter started cuddling with his taggy blanket


We needed to get out of the house and we needed it to be free. Pet Smart to the rescue!


Seriously these two. I love that Ryan and I know these two so well this year that we knew what to exactly get them that they would absolutely love. This made my heart so incredibly happy. Unlike last year when they had only been with us for a month at Christmas.


He would do anything to stare at the TV even if it is just the music channel with the floating blue box.


Uncle love or Beard love...you guess.


We can roll over! Yes we can also roll over back to our back, but much prefer to hang out on our tummy for five minutes and scream for mom to rescue me.



Give a boy your leftover wrapping paper and tape, leave the room, come back to this.


I know it's blurry, but I love the love these two already share. And look at that tummy and chunky legs!


Tuesday, December 3, 2013

Mr Man You're Seven

You are seven.

You love being like your daddy.  Your daddy loves that you like being like him.  You love Arsenal, playing soccer, wrestling, any book he wants to read to you.

I'm pretty sure you aspire to grow a beard as soon as possible.

Your reading amazes me. Every time you read out loud I am blown away at how much you have grown.

You love school. You love your teacher Mrs. Trainum and Mrs. Musser.

You have flourished these past months. You smile all the time. I ask you often where this smile has come from. It came out of nowhere, the joy is plastered on your face.

Being seven to you mean, more chores, more responsibilities.

You adore, did I say adore, your baby brother so much. You speak the world of Porter. You are so proud that you were able to feed him a bottle. He watches you like a hawk. I have a feeling he always will.

You love being the oldest child. Mostly because that means you get to be the boss a lot whether mom or dad likes it.

You want to be in the Air Force. Your new favorite game is to play army.  Marching around the house with nerf guns, scouting any threats.

Your smile...melts a room.

When it is warm out, your outfit of choice is athletic shorts and a polo preferably with the collar popped.

You love cowboys. You wear your cowboy boots almost daily. You love walking around the house with your hat on and gun holstered around your belt.

You have the most profound thoughts about God. You are a thinker. You are an observer.

You are loved.


Saturday, November 30, 2013

We have been loved well.

This year has had moments (that seem to last weeks, months) of survival mode. Hanging on. Getting through each day.  

The best way to sum up this last year, these past four months is we have been loved well.

Loved by our family, friends, coworkers, church, strangers, friends of friends. 



we were loved...

Meals made, meals delivered. 
(My kids would add desserts, lots of desserts that have made their hearts smile.)

A sweet new friend texting and saying 'I have several freezer meals to give you tomorrow.' 

Groceries bought, delivered.

Surprise birthday parties.
Surprise sisters flying in to celebrate.

Prayers, so many prayers. 

Notes of encouragement mailed. There's something about getting a real card in the mail that fills your soul.

Text messages, saying hi. 
and friends knowing I'm terrible at responding especially in survival mode and they're okay with that.

Gas cards at the perfect time.

Babysitters...so many. Giving us date nights, helping with the bigs while the little was at doctor appointments, often with very short notice, watching them when Baby P was born and then jaundice.

Flowers to brighten up our home.

Friends knowing all the money we saved for home improvements this fall was given to doctors' offices, so they surprise us and do multiple home improvements for us, more than we ever would have imagined.

Anonymous gift cards

Acquaintances full of wisdom fitting me into their full schedule to encourage me.

Friends from long ago came and sat in the ER in MN and then stayed while with me while my child screamed getting his EEG.

Perfect gifts that came at the right exact time that brought Ryan and I to tears. 

Almost strangers who have walked the Infantile Spasm road giving us a gift that was life-giving. 

Friends who come and have baby cuddles all day long so I can spend time with another one of my littles who's struggling.

A dad who let's me borrow his car at a moments notice to head to St Paul.

I could go on and on. But know

We have been loved well.
Thank you.



 

we knew

Saturday the 23rd

Ryan carries Porter in the kitchen. 'they've started. He's done it several times. I picked him up but they won't stop.'

I knew.

He didn't need to mention the words. We both knew.

Here goes.

We knew we were in the trenches. infantile spasms.  they were here, barging in our house. Invading our lives. Invading our precious baby.

Then they stopped.  several hours later they came again.  counting 1,2,3....19,20,21.  another few hours and again and again.

It felt like they wouldn't stop because they wouldn't.

Our precious would have just fallen asleep and this *insert swear word of choice* would come along and steal that sleep.

Evening comes on the 24th we head to MN for a Video EEG.  Within 30 mins of being hooked up, they come.  They continue to come throughout the night.  Clusters.

Morning comes, the doctor has seen enough.

Confirmation. infantile spasms.  the name sounds so innocent. Don't believe that.  they try to steal smiles, the ability to roll over, sweet eye gazes.

we praise God that we found them before he had regressed, many parents don't receive that blessing.

Now we wait. We pray.

Pray that the medicine works. That Porter will have rest before the next land mine blows.


Thursday, November 28, 2013

The Thief

Tuberous Sclerosis tries to steal, tries to destroy
          Infantile Spasms is right there too, peaking in. Haunting.

Creeping in they want to strip you of joy. Strip you of the joys of a new baby.

steal the blessing.  steal the gift.

they want to make you OBSESSED with watching, waiting. be CONSUMED.
           to ignore enjoying. to ignore the beauty.


You won't. You can't.

My God is the joy giver.  You won't steal it.  You can't steal it.












Thursday, November 21, 2013

It's been a year

A year since you came home for the first time, when you wept tears missing your last placement, and terrified of what was to come.

You had no idea Ryan and Kaci would become your mommy and daddy. 

You would become mine. I would become yours. We would be a family.

We had no idea what we were doing. We became parents of two with a week warning. But it was right. It was good. It was beautiful, but oh so scary. 

You are unbelievably strong. How frightening to be thrown into a family. A new school. New rules. New life. Stripped of everything that was normal for you.

the BIG feelings 

without the words to be able to share. 

Mad. Sad. Scared. Happy. Those words will never do justice for where you have been nor should they ever. 

God is writing a story. It is good. It will be good. Perfectly good.

There are hard days. On your knees praying hard days. There are beautiful days. Hands in the air praising God beautiful days. 

We have seen healing. Transformation. Redemption. Beautiful redemption.


A stranger the other day with the most sincere joy said to me 'you are so blessed.'

I am.

You have blessed me. Daily. Moment by moment. Undeservingly.


We love you. Miss Magoo and Mr Man. You have stolen our hearts. 







Wednesday, October 2, 2013

Every Little Milestone

Milestones are exciting.

Every new trick a child can do...smile, grasp, move

Each parent waits eagerly for each little thing.

Baby P laughed today. 

My heart was overwhelmed with joy, tears flowed.

Each milestone is so precious with TSC. 

TSC could strip it away at any moment.

But I will live for this moment, the moment with laughter.

For now, I will tearfully, joyfully enjoy each beautiful laugh and praise God for my child who has been remarkably made. 

Perfect 70 Degree Days

Perfect 70 degree days call for escaping. To a place with no one else, just us. 


To run, to stand in amazement


To experience the look in this boy's eye. Pure joy.


To Discover a perfect walking stick and a land of his own.



To become a skipping rock master


To be blissfully free.  'Look wet sand!' It was such a simple thing, but such a gift to her.

Monday, September 30, 2013

God is For Us

What then are we to say about these things? If God is for us, who is against us? (Romans 8:31 HCSB)


God is for us

This truth is a struggle for me to grasp. To hang onto. To choose to believe.

He is for us. 

Our God is for me.

He hasn't thrown more and more on me, wanting me to drown. 

He isn't sitting on the sidelines hoping my family can't make it through this.

He wants us to run this race hard. He wants us to champion it. 

Not for our sake.

But for His sake. For His name.

God is for us.

This overwhelms me in a beautiful way. In a way that gives me strength to take another breath with joy.




Sunday, September 29, 2013

A Quiet Life

I love a busy life. I love adventures. I love discovering new places. I love to go. I love doing this with my three children.

But my sweet child...

She can't. She needs predictability, structure, routine, known expectations.

She needs quiet.

My heart longs for her to heal. I tell God I'll do anything to help. Anything to see a miracle of a crushed spirit become whole.  

He whispers 'quiet your life.'

'But God no, not that.'


Learning to quiet my life for the purpose of healing, for the purpose of my child, for the purpose of her fragile heart. It hurts. It's hard. Seems so selfish the pain in me...it is selfish...

God make me more like you, make me selfless, give me the strength to love my child in a way you have called me to love her sweet soul.





Sunday, September 22, 2013

2 months

Two months

God has given you the gift of breath for two precious months.

God has given me the blessing of my third child.

For two months, we've been sitting and waiting.

Trusting in the Lord.

Waiting.

For more signs to show.

Your skin showed us and we knew we couldn't deny any longer.

Now we wait more...

Will seizures start? When? How many? How often? 

You smile.  You don't worry. 

You live each moment not knowing with a sweet contentment and peace.

Must trust




Tuesday, September 17, 2013

Here Goes...

Life summary since May

Adoption day was perfect.  Friends. Family. Love. Surprises.  What a sweet blessing. 

'You no longer have to wonder. You're their parents forever. You're their kids forever.' -the judge 

A and E are ours.

Stay at home mom. Goodbye days at YESS. Bittersweet.

Therapeutic parenting...exhausting.  

Staycation. Small town celebrations. Family is so good for my soul. Perfect days at Grandpa Paul's with not enough Bomb Pops. 

Swimming. Parks. Bike rides. Sunshine. 

A baby boy

Sweet sweet baby cuddles

A heart murmur, waiting...

Too many doctor appointments...tears come and go

More cuddles. The world stands still as he sleeps on my chest.

MRI...confirmed

Tuberous Sclerosis, a new journey...my child is remarkably and wonderfully made...must believe through heartache

Yet there is something perfect about his baby smile.  A gift that brings joy that can't be hidden.



Thursday, May 9, 2013

Letter to my Mom (part 8)

Mom,

Mother's day is fast approaching.  It is amazing to think  you have been gone for over three years.  I was always told mourning would return during major life events.  I knew it would, but that didn't help prepare me.

In eight days mom, Ryan and I wil be adopting two of the most wonderful kids.  They are gorgeous.  They have such wonderful personalities.  They absolutely love Grandpa Paul and I know they would have loved you too. 

It breaks my heart that I won't and haven't been able to share this journey with you.  This roller coaster of emotions.  The moments of heartache, the moments of unbelievable joy. 

You would have loved getting random pictures sent to you.

You would have loved to know that they beg to go over to your house every weekend.

You would have loved to see the pure delight on their face when they see you. 

You would have loved to see them ride the toy tractors around in your backyard.

Today is hard mom.  The excitement and joy of knowing the adoption date is quickly approaching with the pure sadness of you won't be in that courtroom and you'll never get to know E's silly personality and A's kindness. 

i love you.

your favorite,
kaci jo 

Friday, March 29, 2013

Tuesday, February 12, 2013

Adoption

"As you watch us struggle and celebrate and cry and flail, we also want you to know that adoption is beautiful, and a thousand times we’ve looked at each other and said, “What if we would’ve said no?” God invited us into something monumental and lovely, and we would’ve missed endless moments of glory had we walked away. We need you during these difficult months of waiting and transitioning, but we also hope you see that we serve a faithful God who heals and actually sets the lonely in families free, just like He said He would. And even through the tears and tantrums, we look at our children and marvel that God counted us worthy to raise them. We are humbled. We’ve been gifted with a very holy task." -Jen Hatmaker