Paths

Gavyn spent exactly a week in the hospital in December. We could visibly see that his left shunt was broken and took him to the ER. He ended up having an entire new shunt placed the next day. Instead of getting better he only got worse. After three days of observing him the team took him in for a second surgery; to repair his right shunt that had started to malfunction and also to preform an ETV. It was a scary week with many ups and downs. Things I'm not ready to write about now. 

Ryan and I took turns staying at the hospital and coming home to sleep. I'm not sure I was better rested when I came home, but it was good to see my three boys and tuck them in at night. One of those nights, I can't remember which, I laid in bed crying and yelling at God. Thinking about the healthy and whole Gavyn who grew in my belly and lived peacefully here on earth for a week. Wondering why God let an infection cause so much havoc on his body. Leaving him frail and susceptible to many, many surgeries. I cried. I yelled. I cried. I begged for a miracle. I cried some more. And in the darkness of that night, in the stillness of my heart, I heard God speak to me. Audibly. Gently. Firmly. He spoke to me of Gavyn's path. A path he laid out for him before time. It was the path he was made to walk and no one could have changed that. This is his path. 

A few weeks later I read this scripture and cried. These were the words I was hearing without really hearing them. If that makes any sense at all...

"And I will lead the blind in a way that they do not know, in paths that they have not known I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I do not forsake them." Isaiah 42:16 (emphasis added)

I've been a little obsessed with thinking about a persons path now. How we all have unique and individual paths we will walk. What that looks like and how God's hand is in it. I'm a huge Doctor Who fan and there is a reoccurring theme of fixed points in time and space. Things that can never be altered. I think of Gavyn and his infection. I believed for the first four + years of his life that someone, me, a doctor, could have changed him getting sick. Now I believe it was a fixed point. There was no changing it. 

I was reading Psalm 139 today, it is such a beautiful Psalm. Here are the verses that spoke to my heart...

3 You search out my path

5 You hem me in, behind and before,

and lay your hand upon me.

9 If I take the wings of the morning

and dwell in the uttermost parts of the sea,

10 even there your hand shall lead me,

and your right hand shall hold me.

13 For you formed my inward parts;

you knitted me together in my mother's womb.

14 I praise you, for I am fearfully and wonderfully made.

Wonderful are your works;

my soul knows it very well.

15 My frame was not hidden from you,

when I was being made in secret,

intricately woven in the depths of the earth.

16 Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

I am not sure where God's path for Gavyn's life will lead. This could be the end of the surgeries. It could only be the beginning. That is something we just have to walk through. 

Bravery

When I hear the word brave, a lot of things come to mind. First, I think of my favorite Marvel characters, next my favorite heroines from books,and then I move on to my personal life: family and friends who have made a difference. So when someone asked me to share about myself and being brave, my mind went blank. Me? Brave? Is this some kind of joke? It's the same knee jerk reaction I have when someone uses the word 'strong' to describe me. I'm not strong and I'm certainly not brave. Right? 

There is a verse in the Bible that people love to quote, Philippians 4:13, "I can do all things through him who strengthens me." (ESV) The other thing people love to say is, "God won't give you more than you can handle." You are probably wondering why I would bring these up. It's a simple but not so simple answer. My family has gone through a lot of trials in the last four years and that verse and saying were quoted to me many times. Usually out of context which left me with a bad taste in my mouth. People would tell me I was strong and brave because God had given me these trials and therefore I was equipped to handle them. But here is the secret that I learned from these trials: I am none of those things. 

When my two week old son had a seizure and I rode in the ambulance on the way to the hospital and sat in the corner of the ER room alone while he was surrounded by (literally) every doctor and nurse on staff; I did not feel brave or strong. And later that night when a doctor in the PICU gave us his diagnosis of hydrocephalus, I certainly did not feel strong. Later that weekend when we were told he had contracted a virus from me during delivery that was making him so sick he might die... No, I did not feel brave. I felt small. I felt insignificant. I felt alone. I did not feel as if God was being fair and giving me a trial I could endure. 

And therein lays the secret. I alone was not brave nor was I strong. I was not capable of handling this situation. I spent the next twenty one days in the hospital with an infant while my other two little boys were at my parents’ home. I could never have done this without God. Because in my complete and utter weakness, brokenness and cowardice, God showed up and clothed me in new clothes. He replaced my old life with my new life and gave me a shirt of bravery and strength. Now when I'm staring down a list of doctors I need to call, meetings that need to be held at school, and therapies to which I need to take my special needs sons, I know I am not alone and I can have the strength and courage to do it if I only ask. 

So no, I'm not brave and I'm not strong but I have someone on my side who is and gives me his.   

The hardest part about life is getting over how you thought it should be.

I remember growing up and planning my future life. We all did it, right? I wanted to get married young, have a big family (two perfect boys followed by two perfect girls), be done having kiddos before or by thirty. Of course I would home school my perfect kids, we would learn by going on lots of outings around Saint Louis. My husband would have a good solid job and be the strong spiritual leader of our family. I didn't necessarily think it would be easy but I didn't really know what hard was. 

Jeremiah 29:11

11 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

I always loved this verse. I knew God had a plan for my life and by golly, so did I! I thought my plan was his plan. I set out to do it. I did do some of it. I got married at the ripe young age of twenty. Had baby one (a boy) at 21. Baby two (another boy, perfect plan!) at 23. Babies three and four at 25 and 27. Something tricky happened with the plan though; neither of them were girls.

My husband had a stable job and then got let go, with a terrible economy and competitive job market he didn't get another stable job for seven years. We lived off the unpredictable life of freelance. My ideas of home schooling were soon shot down by an oldest who's personality is not so willing to learn from me. It was solidified by the two proceeding boys having special needs and needing things only special education can provide. My live natural and homeopathic also got thrown down when those two were born. Brain surgery, heart surgery, palate surgeries and the like threw me in the deep end of doctors and hospitals. This home birth momma was way out of her league. I clung to Jeremiah 29:11 for years. Knowing God had a plan, right? 

We searched doctors, therapists and the Internet for five years before getting the genetic diagnosis on our five year old son. I realized no amount of therapies or doctors could "cure" him, a tiny piece was missing and that tiny piece caused an array of problems. I didn't love my son any less and it didn't change him to me. It did change my relationship with God though. I now had a son with a brain condition with no cure and a genetic diagnosis for the other that obviously can't be cured. We prayed for healing but no "full" healing came. What was the plan, God? My plan had gone off in the ditch. 

I didn't understand why God's plan was so drastically different than mine. I had a good plan, full of good things, God honoring things even. But morning after morning I woke up in a very difficult situation. Being a mom is hard. Really hard. Being a mom with a lot of little kids is crazy and messy. Being a mom of a child with special needs is complicated. Being a mom of multiple children with special needs, an oldest child trying to grasp his younger siblings and a new healthy baby felt impossible. 

And I'm not alone. A lot of us are waking up every morning with our hardest thing. Our thing that we carry around and it just feels heavy, oh so heavy. We look around and feel alone. We pray to God and wonder, what was so wrong with our plan? Wouldn't we be more faithful, more joyous, more of everything if our plan had only gone through? 

"Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:12-13

The proceeding two verses are the crux of the whole thing. God's plan for our life is the only one that will bring us to the point of coming to him. Coming to him humbly and praying, begging, and pleading for him to help us, to restore us. His plan will set our eyes and heart searching for Him. Our plans will keep us comfortable, happy and passive. His plans will rock your world. 

God's plan for my motherhood, God's plan for my wife hood, they rocked my world. They changed my heart. They changed the course of my life. My way wasn't "bad" but I wouldn't have needed any help. I could have done that life on my own will power. God's plan brought me to my knees, literally. I had no strength, I had no answers and sometimes no one had an answer. I had to learn to take everything to God. I had to search him for answers and leading. The plan he set for my life is bringing me closer to restoration with him. It's making me more like Jesus, slowly and painfully. 

I know that a lot of us are looking at our lives saying, it wasn't supposed to happen like this. We are carrying burdens that are hard, everyone's hardest thing is their hardest thing. No judgment there. I encourage you to not look at your peers, don't look back at your parents, and don't look to the world. Search Jesus, prayerfully and humbly. Find his will for your life. Ask him to reveal his plan. There are a handful of things I know to be true and one of them is, God is faithful. He will walk the path with you and carry the burden when you can't. 

Hello

Hello little blog, 

I've missed you. Have you missed us? Life sort of got in the way last year. Four little men growing up. Five surgeries. Multiple vacations. The best friend I have ever known moving away. New friends. New groups. Learning new lessons and mending new hearts. Writing a book. Last year was full to the brim. Not all bad. Not all good. Life is life, and so it moves on. 

Looking at the coming year and the things I hope to accomplish. Finishing editing the said book. Getting away on a couple vacations. Children starting new schools/grades. Starting the next chapter of my life. 

The next chapter of my life... That one scares me a little. I feel like I always planned up until I was thirty in my head. You know... Get married young, have four kids, not have more kids after thirty, raise said kids. It didn't really occur to me until now that I didn't plan much for when they are all at school. Starting this fall I will start having a few mornings all to myself. How will I fill the time? I can hear some of you chuckling. I know, I know. I can do whatever I want! But, that's the point. It's too vast and too easy to misuse; when you look at it that way. I need to set some goals and work on those. Otherwise, I will waste half the school time sitting in Starbucks or walking around Target. Right? I'm not saying those are bad things, but they surely are not the best. I need to figure out what I want to do with the next ten years of my life. Because in ten years I will be "done" raising two boys. That's a sobering thought. 

I know my job as mom will never truly end. Especially with two special needs kiddos. Their paths could take them in many directions, they could have me intricately woven into their lives. Or, they could not. They could both have stable jobs and get married. You can never be too sure. I am pretty sure the good Lord will grant me ten more years. What I do with them is up to me. I surely don't want to waste them. 

I see a lot of writing in my future. Like... A whole lot. I may just fill my time up with it. I also see photography making a come back. And I love doing crafty things, I need to make time for that. It's exciting and terrifying. I have six months to figure out no enjoy all my boys being around.

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.