Monday, March 23, 2015

Bitter Sweet

This weekend we get the privilege of speaking at the University of Minnesota Children's Hospital Dance Marathon. It is an amazing event, where the students at the U raise money for the hospital. Last year we went, and had a blast! A huge bonus was meeting a dear friend and her son. More on them in a later post.

I can't get over how much I have grown, and learned since Gavin came into our lives. I will surely never be the same. Lessons of love, heartache, joy, anxiety, faith, and gobs more. As I think of what to share this weekend, I spent some time reflecting on our little boy's life. It has been a crazy ride, and I am thankful for every moment - yes...even the hard stuff!

 All the "normal" moments in his first year. The milestones, the first words, and all our cuddle time. It helped my mama-heart grow and flourish.

 For moments that seemed so hard, and all we had to cling to was our Lord. Those moments taught me to trust, and have faith that Almighty God has us in His hands - always.

 Seeing life through different eyes. For most, fans and lights are a means to see in the dark. To us they are that, and so much more! I can't get over the joy that he still gets when he is near a fan. Lord, may he always keep his love for little things.

 Tests that tried our patience, and yet grew it at the same time. We are so grateful for our hospital - the University of MN - without it, I can't help but wonder where we would be.

 Nebs - oh the nebs. God must have known that I needed an abundance of cuddles. They are still my favorite time of day. We get our cuddles in the morning and at night - and a couple added times if he is sick.
 His heart radiates through his eyes. He has always been told what beautiful eyes he has, and no doubt the mile-long eyelashes help, but to me it is the sparkle in them. The fiery little soul that brings me and so many others joy.
 We have learned to find joy in times when it was hard to find. It isn't about having it all - the cars, clothes, and cash can only get you so far. At the end of the day, I'd rather have Jesus, my men, and my family than all the things this world can provide.
 I thank GOD that He saw me fit to be the mama of a boy. I always felt bad for moms of boys - the dirt, wrestling, and noise they bring. Oh how I needed that in my life! I never saw myself having a boy, and man am I glad I didn't get to write that part of my life! He is the answer to my mama-heart prayers.

As I look back I can't help but get a little emotional, wishing for a few of those moments back. As great as those days were, I am so thankful for each day the sun rises and I get to be a lone woman in my house of men.

Wednesday, March 11, 2015

Sweet words

There are so many things that I know I will unintentionally forget about Gavin's toddler years. There is simply too much to remember from day to day.

Where has the time gone?

That being said I don't want to forget:

that he calls his dinosaurs 'Di-no-nos'

the way he speeds through Twinkle, Twinkle Little Star - only a very few could pick up the tune, and I am thankful that I am one.

when he is hungry he still says 'nuga-nuga' (translation: I'm starving). No clue where it came from. It was one of his first words, and it stuck.

how he started saying 'cuddle' after his surgery when he was in intense pain. Now it is his signal to me that he really just needs a hug from mama, and I never miss an opportunity to cuddle.

whenever someone toots, or even makes a sound like someone tooting - he ALWAYS says "Daddy toot (insert giggles)"....sometimes daddy isn't even in the house and he still gets blamed! Sorry honey.

how he says "Jason -- come -- HERE!" in a low gravely voice, while he points to the floor where he wants him to go.

he has "nuther puppy", "cuddle puppy" and "fluffy puppy". Cuddle puppy & nuther puppy are tied as his favorites. Fluffy puppy is the softest, most adorable puppy that was gifted to him by our small group before his spine surgery. All spend the night in his crib.

his crazy obsession with fans. Anything that can be made to go round-and-round, he will get to go round-and-round. When he leaves a room with a fan he has to yell "bye-bye fan!" at the top of his lungs. He has always been a fan-lover, and I thought by now he would have lost interest - think again mama!

Last but not least, before when he would pray he would mumble something that I couldn't understand. For the longest time have been trying to figure it out. Now I recognize that he says "Abba-dada". For some this may sound like jibberish, but for me I immediately recognized abba, meaning heavenly father - an intimate word for God, as father" and dada - well that is his daddy he is speaking to. Not his earthly father, his heavenly one. This may seem common-place, but we have never used the term in our home, not that we don't approve of it, but it just isn't a commonly used word. So for him to have said that on his own - blew me a way and brought me to tears. He LOVES to pray, and even when we talk about someone needing prayer he will stop what he is doing - put his little folded hands to his forehead and say their name. Thank you Lord for the work you are doing in my sweet boy's heart!

Tuesday, March 3, 2015

MRI 3/4/15

Many of you who have followed our story from the beginning remember Gavin's little "bump" he was born with. It was a form of Spina Bifida. In a nutshell the spinal fluid went through an opening in Gavin's skull. He had surgery to remove the bump, they placed a mesh barrier to allow the skull to grow closed. Last February we had an MRI to make sure the hole had closed, but it was still the same size.

This is what the bump looked like before surgery: 

Tomorrow we go in for another MRI of his head and spine. It will determine if he will need surgery to close the hole. They will take a bone composite and fill in the opening and that will fix it permanently.

I know a lot of you have been praying for us, and I ask that you specifically pray for him tomorrow. He will be intubated and sedated for the 3 hour MRI. He usually is great with sedation, and we are praying that tomorrow is no different. Pray for his patience - no food after midnight. Pray for the results. We have been praying that it closed. If that is not the case, we praying that we would be content and confident to face another surgery.

They will also be examining his spinal cord. He had the tethered cord released at the same time that they repaired his bump. The last MRI showed fluid in the spinal column. It should have disappeared after the surgery, but that was not the case. It is possible that the scoliosis was contributing to the problem, and since the spine fusion surgery corrected the scoliosis, we are praying it also corrected the fluid. The last conversation we had with neurosurgeon, he indicated that most people don't need surgery to correct this, but it does need to be monitored.

I apologize for the long list - but we are grateful for all of our prayer warriors!