Friday, August 22, 2014

Today's Numbers

There is something about knowing your child is delayed. It isn't as heart wrenching if it is just you and google trying to figure out where they are developmentally and what you need to do.

Don't get me wrong, Google has seen my share of tears, but Google doesn't judge those tears. Google doesn't feel the need to awkwardly comfort those tears.

It's something else when an expert tells you. When they tell you the numbers. Tell you not to pay attention to them. When they tell you with certainty that insurance will cover this or that therapy because the numbers are so low. That the numbers aren't even on the chart.

When you hear this, its hard to physically swallow. But you must because if you don't tears will stream down your face. And you would be a fool for crying because these numbers didn't tell you something you didn't already know.

The numbers feel more real though. The numbers you can't hide behind. The numbers try to strip my hope. The numbers show me we need to fight. I'm tired and weary. I don't want to fight but I must and will. We will fight for you Porter. We believe in you.





Saturday, August 2, 2014

One Year Ago

One year ago I took Porter to the Cardiologist due to a heart murmur that his doctor heard at his follow up appointment from his hospital discharge. We were assured by many friends that lots of babies are born with heart murmurs. They are common. They heal themselves. It's no big deal.

Ryan didn't come with because we so believed it would be no big deal.

We had a friend watch Abel and Erni in the waiting room as we thought it would be a quick appointment. That poor friend. The appointment wasn't so quick.

The doctor came in and said he saw something. I immediately called my husband and put him on speaker phone.

Multiple Cardiac Rhabdomyomas.

The doctor has seen this a few times. Only ever associated with the disease Tuberous Sclerosis. He said be careful what you google. Only go to legit medical websites.

Then came the neurologist. The nephrologist. The ophthalmologist. The geneticist.

Tuberous Sclerosis it was.

As I reflect on this year, I've learned a whole new vocabulary. tuberous sclerosis. cardiac rhabdomyomas. tsc2. subependymal nodules. SEGAS. cortical tubers. retinal hamartomas. shagreen patch. ash leaf spots. facial angiofibromas. infantile spasms.


I've learned to love every moment with this child. I've learned that he is a precious gift from the Lord. I've learned to love every little milestone he has, even if it is as small as intentionally letting go of a toy. I've learned happy tears are in place when he finally turns his head to your voice. I've learned Ryan and I are the best advocates for him. I've learned it is hard to figure out how to always advocate the best for your child. I've learned to be amazed at how strong my child is.

I've met a community of women who are walking the same path. I get to cry happy tears with them as their two year old finally takes their first steps or their one year old smiles for the first time in months. I get to cry tears of sorrow when the seizures come back in their little ones as they fight to find the perfect combination of drugs to stop them or at least slow them down.  


I wish I could say I've learned not to google so much, but I'm not quite there yet. I wish I could say I've learned not to compare him to other children. I'm learning this slowly. I have learned to love every moment, every smile, every cuddle.


The day before. Big brother holding the little man.


Little did I know in ten minutes after I took this photo my life change.


Daddy soaking up cuddles that afternoon. Such a precious little man.





Thursday, July 31, 2014

My loves


Three of my loves with two of their cousins.

Tuesday, July 29, 2014

Innocence Questions

I often read articles 'Things you Should Never Say to...' I fall in many of these categories. I hear many of these comments, many of these questions.

I could be hurt.

I could be defensive.

I could be offended.

But I try my hardest not to be.

I really believe 99% of people who reach out, who ask questions, who comment really care, really love. They are trying to show it the way they know how.

I pray I always respond to these comments and questions with grace. I have a beautiful example before me of a mom who I have always seen respond in such grace. I want to be like her.

The times I realize they hurt me, they annoy me, they sting me. It's because of my own junk. Me not believing who I am in Christ and who my children are created to be.




Friday, July 25, 2014

Porter is a Year

Baby P is a year old.

He adores his brother and sister and they adore him. It typically works out really well except for the few times the bigs don't quite realize their strength.

He crawls, everywhere. Loves going from one thing to the next. He likes to open and shut things. He also is a fan 'standing' on his knees. No real desire to get on his feet yet, but he's all about kneeling.

He responds to familiar voices with smiles.

He mostly wakes up happy with smiles and laughing. He'll sleep from 700pm-700am with waking up once a night.

He loves raspberries, yogurt, milk, chicken, banana/egg pancackes, and peaches.

He started saying momomomom, bababababa.

He only cries or whines when he's poopy or tired.

He will happily be held by anyone unless he sees his mom. Then he only wants his mom.

He loves being outside, playing in water, taking baths, chasing our dog.



Photos by Kassie Maroney



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.