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.