My Sunshine

So I had to share this sweet little video he made for his cousin, Drake. He sings these songs quite frequently around the house. However, when I try to record him he stops singing. He will do anything for Drake - so he sang his heart out for him.

You are my Sunshine was thee song that I sang on repeat when I would rock him in the hospital. When my brain was worn, and no other songs would come to mind - I could count on it. One night I remember that song turning into my prayer. His oxygen sats were low, and his body temperature dipped to 96 degrees. His heart rate kept dropping, and in an attempt to warm him up I held him skin-to-skin. While I held him I kept that song on repeat - and prayed "please don't take my sunshine away...please don't take my sunshine away...please, Lord, don't take my sunshine away".

I am so thankful that my little man can now serenade me with this song. He will forever be my little ray of sunshine.

I blog...

Many times I sit down to express the inner workings of my heart, but nothing seems to be worthy of writing for anyone else to see.

Why do I blog anyway? is it for myself? for others? 

I blog

so that by sharing my heart. the aches. the joys. the everyday "normals". 

that maybe someone else out there needs to hear my heart, and then instantly know they aren't alone.

I blog

so that I can share the workings of the Lord in our lives.
I'm not much of a public speaker, but here - here I am able to be honest, open, and a tad bit vulnerable.

I blog

so I don't forget. 

Going into mommihood I knew I wouldn't be the type that kept tabs on when the first tooth came in, and second...and third. Bless you if you are!

I do remember the feeling when he first walked,
the feeling when he first said mama, and how my heart almost burst when he gave me that first kiss.
Funnily (or not), my calendar is filled with Dr. appointment dates, I know the date of his first, second, and third surgeries. I know the dates of his seizures,
and I can rattle off all the information necessary to get Gavin registered for a procedure.

I blog

because it is a creative outlet.

I can put my thoughts, dreams, fears, and hopes on here.
Mine - not anyone else's.

Grace

The more I live, the more I realize that everyone has their own "hard".

...The father struggling to keep up with the ever growing demands of his wife and children.
...The daughter who lost her father. He was her hero - he always will be.
...The mother caring for her medically complex child. Day in-day out. No end, no break.
...The parents who lost their son. Why him? He was too young.
...The new mom, struggling to stay awake during nightly feeds. She can only hope to have enough energy to welcome visitors who come to see her new little one.
...The dad who regrets missing out on special moments in life, all because he was chasing the American Dream.
...The wife who clings to her lost love. Just one year ago. Running to his closet to get one last breath of his scent.
...The family, torn apart by a broken marriage. How did it come to this?
...The sister, longing for a healthy brother. Why does he seem so distant these days?
...The mama doing the parent thing on her own. What would she give for a break?
...The student who struggles each day, but one cruel peer's words make them question if all this is worth it.
...The parents who made it home from the longest hospital stay of their lives, only to feel overwhelmed beyond belief. How will they make it each day?
...The mom/wife/caregiver who fears what will happen when she is gone. Who will love on her littles like she does? Who will be the cheerleader for her husband? Can cancer be so cruel?
...The girl wondering if love will ever find her, or if it will only continue to find others around her.
...The one who by all appearances has it all together, while inside lies only broken pieces and broken dreams.


You see - we all have our own "hard". Don't believe me? Just look at your family. Your friends. Really look at them - really SEE them.

With outstretched arms, extend GRACE. Open up your hands and let love flow. Speak uplifting words, and always - ALWAYS know that God is in control of your "hard". He sees you in your need, and He isn't about to let go.
Rest in that. Some days it is all we have.

Absent here - Present in our (crazy) Life

I'll be the first to admit that I have fallen off the blogging planet. Partly because SO much is going on that I don't even know where to begin, and partly because I don't have time to write down all that is going on.

On the home-front we have finished construction of our new garage shelving. My husband is truly talented, and I have been blown away with how much he knows about upkeep in a home. Gavin is growing (up to 18mo in shirts!), chatting up a storm, and learning how to be polite by saying "excuse me" or "nummy" as he says. A little strange when a stranger burps and Gavin says "nummy"... We are waiting for a call to schedule his spine surgery. More on that later (this is a fun non-medical post).


We have had multiple family outings to catch you all up on - and for your sake I will keep them short.

MN STATE FAIR - first time ever for Gavin and I.
Had a great time! Not yet the "yearly-dedicated-diehards", but we will go again someday.

RENAISSANCE FESTIVAL
A definite yearly event for us - Gavin LOVED it!

UNIVERSITY OF MINNESOTA 

Tailgating and game - Gavin's first for both.

Had a BLAST!

HOTELS

Gavin is forever in love with the poooooool

HOPE KIDS EVENT

Can't say enough good things about this organization.

They make it possible for families with medically complex kiddos
 to get out and go to awesome events!

PARKS

Our little dare-devil loves the slides. Over and Over...

Last but not least Gavin anxiously waited
for the phone call that his newest cousin was here.

BABY DRAKE
He's here! And they are best buddies for life!

 Can't get enough of this little face. One proud auntie!

That's it - in fast, record time.

I promise to try to keep my updates on a more regular basis. I really do love blogging - life has just got away from me.

Parenting.com

I was, and still am honored that our blog was featured on Parenting.com. Our debut on "Our Mommy Blog Faves: Hospitals and Doctors" segment was HUGE to me since I frequented their website all throughout my pregnancy, and still go there when I want some great tips! (Last looked at: What to do when all your child says is "NOOOOOOO!" Yep - sweet Gavin learned a new word on Friday. As our therapist would say "that's right on target developmentally" - so for that, we celebrate!)

Thanks to all of my family, friends, and strangers who have supported us on this journey. Never did I think we would be so versed in hospitals and all things medical. I can't imagine life without the help of our great Doctors, nurses, and therapists at Amplatz Children's Hospital. Many of you are like family, and we feel so blessed to work with you all!

Nothing deep

I have tried to think of something "deep" to share. Something that reflects this Easter weekend, but it's just not coming. Maybe it doesn't have to be deep - maybe it is just the simple, yet AMAZING fact that we have a Savior. A Savior who died, was buried, and rose for US! For our sins. The weight of the world's sins - past. present. future. are wiped clean for those of us who trust in Him.

It is reason to celebrate! Reason to be thankful! Hope for our future - peace for today!

Pre-esophagus dilation. 

Rosy cheeks! Happy boy!
The dilation went great, he shouldn't need it done again!

April 17th snow DUMP!
We got 14 1/2 inches at our house.

Gavin's favorite - BATHTIME!

Happy boy at daycare! We love our Nikki!
Our little boy is growing up! Doesn't he look old?