What is this blogging thing?

Hey. I know. I sort of dropped the blogging ball and let it roll off... again. Anyway! I have lots of excuses. Want to hear them?

Gavyn's birthday is February 19th and every year I run a gamut of emotions. It goes like this....

Gavyn's birthday is approaching - I get so excited! My fighter has made it another year!

It gets closer - aw, I am so sentimental about everything we have been through.

It comes and it is a huge celebration!

The next week I get melancholy. I remember how in that first week after his birth it was the only week of his life he lived without hydrocephalus.

By week two I get down right sad. Because on March 5th he had a seizure and we realized he was very, very sick.

But guess what happened this year?! Did I run the gamut of emotions? You betchya. But, I got a little derailed because on February 23rd we ended up in the ER with Mr. Gavyn and a broken shunt. That's right. I didn't have enough feels during that time of year now I get to remember the year he turned four and had his third brain surgery. Geez. I am actually not complaining. I thank God every day for his successful shunt that he has had for four years! I mean, I know of kids not much older than him who have had 30+ brain surgeries because of shunt failures. You know where to count your blessings with hydrocephalus.

Back to my excuses... that was my first side road we had to go on for a bit.

Then March 19th Nevin had an MRI of his heart to get a better peek at his vascular ring. Well, what do you know? Our cardiologist came and got me directly after his MRI to have a little sit down. Mostly I remember the word "surgery" being repeated a lot during that impromptu meeting. I walked out of that one just thinking, "crap pants! We just had brain surgery!" We seriously met with our awesome heart surgeon Dr. Huddleston the following week and scheduled heart surgery for April 4th. So... yeah... do the math. Two "minor" (as far as the surgeons were concerned) surgeries in a very short amount of time.

Again... I am not complaining. Kids with 22q who have heart problems usually have much more severe issues. I am extremely grateful to have a "minor" surgery and not have to go back for more.

Those are my excuses for not blogging though. I want to try and pick it up again but who knows... These two keep me busy!!

 

4 Years Ago

Four years ago today it was so warm that a mom took her two young boys and brand new baby boy to the park to let them play. Sitting in the sun watching the toddlers play thinking it was good for the baby to warm up and soak up the sun rays. She had no idea that that would be the last day of her "normal" life or what she thought was normal. 

March 5th, 2010 is exactly two weeks from Gavyn's birth day and at 5 am that morning he woke me up with a cry I knew was not right and by 7 that morning he had a seizure, we called 911 and by 8 something that morning we were at Cardinal Glennon realizing we had a very, very sick little boy. Of course this is a very familiar story to most people we know and we all know that 4 years later he has beaten the odds. He has come through a serious infection, had three successful brain surgeries, learned to sit up, roll over, crawl, walk and run. He is a miracle. 

But every year this day, March 4th and tomorrow, March 5th find me a little sad. The dreams and hopes I had for my boys on March 4th, 2010 are vastly different than the dreams I have for them March 4th, 2014. I'm not sure if I've lowered my standard or raised it very high quite honestly. The one thing I hold in most importance has not changed, for my boys to learn about Jesus and realize that they need a Savior and to walk in His ways. 

To realize that while all people are created equally they don't all look or live the same and that is actually OK and beautiful. 

To have empathy for those who are not as strong as us in the way we see strength. I say that mostly for Skyler and Gideon who are very strong, smart capable boys who will grow to be strong men one day. And the world will see them as strong and intelligent and I want them to remember the amazing strength of their two middle brothers. Because living each day with a disability and not complaining but striving for more is brave and strong. They don't need to be forgotten or put to the side. They need other people with appreciation for their gifts to go along side of them and pull them to the forefront. 

It would be great if they went to college or trade school, got married and had children but people are more important. How ever they feel they can serve people best is how I want them to spend their lives. It isn't just about us in our little bubble.

Which brings me back to Gavyn. I feel deep down that that boy has a calling on his life. There is something that he is going to do that will make all this suffering worth it. It would be meaningless otherwise. He has a passion for life and a will to fight for it. He could have stayed quiet as a little baby and passed in his sleep maybe a few 24hrs later but, he didn't, he kind of made a ruckus and we were able to get him medication and help in time. He wants to be here because he has something to show us and something to say. I'm sad for the suffering of my kiddos but I'm excited to see what they will bring to the world. 

Happy Birthday, Here's your Genetic Diagnosis 1 year later

Happy birthday to my sweet, fun-loving, super-hero-crazed, animal enthusiast, strong willed, fighting, Nevin! 

For good or for bad Nevin's birthday will now always be connected with his genetics diagnosis. It is confusing to realize it has been only a year since we got that call. A few things we have learned in that time...

His carotid  arteries are not exactly where they should be. They wiggle around on the back of his neck.

He had a submucus cleft palate. 

He has a vascular ring. Simply his heart is not shaped normally. 

His flat feet, his speech problems, his obsessive tendencies, his hypothyroid, his delayed cognition all are related to his 22q. 

I will never lie about it, Nevin is a tough case. He is a hard kiddo to care for. 

But we love him and he is ours. I have always and will always protect him like a momma bear. 

As hard as it is to look back over the last year it is harder still to look into the future and wonder what it holds for us. Some days look bleak and other days I have hope. I am sure the future will be mingled with both. 

I took a map the other day and cut it into a circle, then I took a puzzle piece punch and punched out pieces all over it. Skyler and I looked at the map and talked about Nevin's brain. We talked about how our brains are like maps with roads all over it. Then we took out the pieces and talked about what pieces are missing in Nevin's brain. It was good and it was hard. He wanted to know why it had to be that way and I had to tell him I didn't know. I had to tell him it makes me mad. It makes him mad. 

I do believe there is a plan and a path we have to walk with this. I will admit that I am terrified most days to walk it and see where it is leading. But I can not let it consume me or my family. 

He is a strong boy and has surprised us in the past and will hopefully surprise us many times in the future.