Wednesday, February 5, 2014

'All we ask for is a healthy baby'

The other day I heard a soon to be momma state that all she asks for is a healthy baby.
She had a pure and beautiful heart, so excited for the baby kicks she felt often.

But in reality, what if your baby isn't healthy? What if your baby struggles to breathe its first breath? What if your baby never learns to walk? What if your baby never learns to speaks words your dream of? What if you baby has seizures while your rocking him to sleep and there's nothing you can do? What if your baby looks different? What if your baby never sleeps through the night?

The truth is
All children are a reward from the Lord (psalm 127:3-5) The kingdom of God belongs to children (Mark 10:14) God has ordained praise from the lips of infants and children (Psalm 8:2) He has knit this precious one together in your womb (Psalm 139:13)


No matter what, your baby is a blessing a beautiful blessing. No matter what struggles come, what heartaches come, what dreams are shattered...they are a beautiful blessing. Don't forget that.

 

Wednesday, January 8, 2014

A Holy Moment

'momma can you dance with me'

so many things to do on the to do list run through my head, so many things to accomplishment.

just a sec. I finish my task at hand. moment delayed, but God's grace grants me this precious gift still...undeserved.

I lifted the beauty up in my arms. We dance.

'just to hear
just to hear you
just to hear your word can make me whole'

she melts in my arms. we dance away.

God you are making her whole. You are redeeming her crushed spirit.

You are redeeming me. I struggle to love this one. She pushes and pushes. I feel weak. I choose love; I choose obedience, I fail over and over. How do I show love to your precious one? How do I show her You are the one who can and will heal the crushed?

This moment love is easy.

I needed this moment.
the facade of summer as the sun shines in through the window, the hope of newness.

I needed a moment to show me the hope. The hope as she melts.

The hope as she pretends to fall asleep. The reminder she feels safe. that's terrifying to her, but You are healing that.

we sit with her head burrowed in my neck, we rock. two more songs play away.

'and I can't wait for the sun to go down
so I can see the stars
and understand how real you are
even from so far'

'I will never be the same again
I will never be the same'

You knew. You knew I needed this moment today.

thank you


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.