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. 

I'm not sure where the first half of September went. I could barely believe it when I looked at the calendar today it said it was already the 16!

We are finding our groove with school, activities, therapy, homework and such. It was a rough take off but things are leveling out nicely. We have an incredible amount of help this year and that has made a world of difference. Our new roommate is super helpful in the mornings and evenings when she is around also, with her flexible schedule she is able to help when I need to run a kid to the doctor. My good friend Tina has gone through some major life changes and happens to be available to help me a lot as well. She even has a special day every week she comes! Thursdays with Tina - we love it. Of course my mom is always and will always be helping us as much as she possibly can. It takes a village to raise my children and I am ok with it. After doing most of this (doctors, school, therapy) on my own for 3 years I am accepting and welcoming the help with open arms. I am realizing more and more that we are meant to live in community and that means letting people into our messes in a very personal way. We have a small tight circle that knows all the dirty messy things that go on in our life (just like everyone else) and love us anyway. We are committed to walking through life with these people and they are committed to us. It is a breath of fresh air. It has enriched my life, my kids life, my marriage. I wish all families with special needs could experience the community we have. I know some do, I am afraid a larger percentage don't though. I know we did not for years, as I mentioned before. We are blessed to live by family, a lot of family and be close in relationship with them. That has always meant the world to us and I know a lot don't even have that. Anyway.... we laugh a lot about how it takes a village to run our life. Some days more than others! Thursdays in particular are crazy in the evenings with multiple kids needing to be at multiple places at the same time. We knew having a large family that was something that comes with the territory. Even with each kid only allowed to do one sport or one activity outside of school at a time that is still 4 things to get to each week. I know it will be a little nutty from now to eternity. Right now I am grateful for extra mom's to help raise my kids.

School

The school year is in full swing! Nevin and Gavyn went back on the 15 and Skyler started the 20. In some ways this year will be calmer but when you have four boys your life will always be busy. This year the three oldest are in school but three different schools. Gavyn does preschool two mornings, Nevin has all day kindergarten five days and Skyler is in second grade. When we were picking schools for Skyler we found a fabulous small private school that uses the Charlotte Mason philosophy. It is everything I could ever want in a school, we love it, he loves it, they love our son, it is a great fit. When Nevin was ready for school though we knew he needed all the services public school can offer. He needs the therapy, he needs the pull out time, he needs a lot and our beloved private school can't offer him that. We put him in a great public preschool and he had lots of help! It was a great fit for him. When Gavyn turned three we knew we faced the same issue with him and enrolled him in the same preschool Nevin was still at. In my delusional mind by kindergarten Nevin would be ready to go to SCCS with Skyler but, obviously, that is not the case. Thus enters the year of three kids in three different schools. Right now we are evaluating the school issue year by year. The private school is a perfect fit for Skyler, the preschool is the perfect fit for Gavyn, I am having a hard transition to public kindergarten for Nevin but I think ultimately it is the perfect fit for him. Ryan tells me every time I cry about kindergarten that we need to give it a good try and if we decide it is not a good fit we will find something else. Honestly though, Nevin goes to school happy and comes home happy, I think it is a good fit. And when Gavyn is ready for kindergarten (2 years from now) we will evaluate where he will go. 

What this year may bring

We have been insanely blessed this past year. Ryan landed a new job in the communication department at First EFree Church. He does the graphic design, communication, video type stuff. He loves his job and the people love him. It has been so good for our family after 8 years of financial struggles and 3 years trying to do freelance work. It is reassuring knowing when the pay is coming. We have had other doors, financially, open up for us recently as well. I knew it was a burden we had been carrying, I just had no idea what a load it was until it was gone. Having four kids is obviously hard on the finances but when you have two with special needs it really adds to it. There are many things we don't do or can't do. I am in no way complaining about this. We have had very supportive family that has helped us and gone above and beyond to help us make life good for our boys. But in the last six months, having so many doors open, having so many blessings falling down, it is overwhelming. You feel undeserving and like it is a mistake. Knowing that we don't need to worry about finances for Gavyn is liberating. Knowing that we will be able to do extra therapies for him and other extra things is exciting. You always want to do the best for your kids but sometimes you simply can't do all you want, I feel like now we are being freed up to do that much more. It's exciting to not have to worry about the future for him and us. 

Eye Sight

When Gavyn had his neuro surgery last October he recovered well but two days after his surgery his eyes crossed. It caused quite the scare in our house, after neuro surgery a big warning sign that something is wrong is eye sight. We had to rush him back to Glennon, have a CT done and see his surgeon. Thankfully he was OK, unfortunately his eye sight has been greatly impacted since. Slowly they have been un-crossing and for the last couple months we have been doing eye drops every night to help them further. Next month we see his eye doctor again and see if Gavyn needs to have eye surgery to fix the problem completely or if the eye drops will ultimately fix it. Talk about a slow painful process - almost a year! I had almost forgotten how much progress his eyes had made until I was looking at pictures, this is him in February:

Look at how terrible that left eye is! This is him now:

 Woah! Keep our fingers crossed for no surgery!