Best friends

These two...

Destined to be best friends. Look at that proud little smile. 

One brother has been through 3 hospital stays and 4 brain surgeries since the other was born. 

And little brother was always there to help push big brother along.

They love to be silly.

Little brother follows big brothers lead.

They are perfectly sweet together. 

My heart hopes that they will stay forever friends. All four of them. 

Tina

See that person there on the right? That's my best friend Tina Bradford. I decided she would be the topic of the blog today. Why? Because she's awesome. We have a running joke that she's my wife because I can't do life without her. I mean, the kids dentist office pretty much assumed she was my partner for the first year of going there. When we would go out with the kids, people would ask her questions or speak to her as if she were my kids mom. I have to ask her what my prayer request is at bible study. She always gives a better one than I can think of. I guess I'm not broken in half but thirds, she and Ryan are my better counterparts. 

We didn't grow up together. We didn't go to high school together. We didn't even meet until four years ago. We met at a small group in our church. Ryan and I had joined the year before and for some reason when Matt and Tina came, I felt compelled to get to know her. I'm not sure why. We seemed to have zero in commen. I was a married, stay at home mom, with three little boys. She was a married twenty something, going to grad school at WashU. Her and her husband were from Alabama and weren't planning on staying in StL. She later told me she kept coming to the group telling herself, "well, I know Amanda likes me." 

The following fall I was getting ready for the craziest school year ever. This was my schedule. I knew a little from prayer time in group that Tina suffered from migraines, but not a lot more. She shared she was taking a semester off school for her health. My hubs spoke up and said, "well, if you aren't doing anything you need to come help Amanda." If I remember right her Matt agreed she should. Basically, our husbands set us up. 😉 I don't remember how it went down but for the next few months, every Thursday Tina would come hang out at my house. We would take care of kids, run errands, get starbucks. I remember a lot of driving around in my car chatting. 

And during that time something amazing happened. We got vulnerable with each other. We got real. We laid it out. The good, the bad, and the really really ugly. We realized that we had a lot in commen. Yes, we seemed like an unlikely pair, but in reality we were the same person. And in finding our common bonds we helped pull each other out of darkness. 

You see, we both suffered from pretty severe depression. Mine had gotten better over the years but still loomed. Tina's was pretty bad at the time, and just living life together made us better. It helped us laugh and be goofy. We could remind each other that God was good. That our husbands were trying hard. That people loved us and the sun was still shinning. 

We were each other's go to person. When my kid was having brain surgery, Tina was there with Starbucks and a hand to help. When her adoption process got rocky, I was there to take her out. "Only Peeta can make this one better." We just did life together, all of it. Cleaning house, grocery shopping, packing, hospitals, babies, road trips, everything. 

Tina Bradford isn't just my friend. She isn't even just my best friend. She's an extension of me. There's no replacing Tina. She isn't just dear to me, she's dear to my children and husband. After she and Matt moved to Boston, Ryan often says, "Man, when is Tina coming back?" If something is hard at home. When the kids have a success (a good grade, a picture they drew, potty training) they want to tell Tina. She is the sister I never had, the crazy aunt the boys can depend on and the person my husband trusts to help me feel better. 

Everyone needs a friend like Tina. And to think, if I would have only sought out people just like me, I would have missed the greatest friendship I will ever know. I love you Tina! 😘

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!!