Doctors

On Friday Gavyn had an MRI of his brain done. It was to follow up on his progress since December. He has been doing great, but my anxiety slowly began to build Friday morning until today when we met with his surgeon. I longed to hear the words, "The MRI looks great!" Gavyn needs good news, we all need good news, last year was simply too much.

And guess what? We got good news! His surgeon was pretty excited that his MRI looked good and that Gavyn himself looks good. They had a nice little chat, Gavyn gave him a big hug and Dr. E told him he loved him, we even got a picture! Which has inspired me to get pictures of the boys with all their specialists this coming year. Because these doctors, these nurses, the people on the surgeons teams; they aren't just people to us. They are an extension of our family. Without great surgeons like Dr. Elbabaa, and pediatric doctors like Dr. Andreone and Dr. Werner in the PICU, and nurses like Anne, our Gavyn might not be here or might not have the quality of life he has. It takes a lot of special people to help make our family tick. 

Potty training.

This is the front of my fridge....

When Skyler and Nevin both turned three we started potty training. I had tried to train Skyler at two but it didn't go over well. The more I researched the more I realized boys do better later. He had just gone from first born to big brother and the "terrible twos" were setting in. I waited a year and he was pretty easy at three. With Nevin I didn't attempt until the summer after he turned three. By the time school started he was pretty much in undies. I figured I would do the same with Gavyn. 

The fall before he was going to be three I realized he would be starting school in February right after his birthday. That way he wouldn't lose time with therapy, he would transition from in home to school seamlessly. Nevin had been different because we moved and... That's another blog. I thought maybe he would be ready and we could try, take it easy! That was a no go. We tried a couple different times from the fall to the spring and it was apparent he was not ready. 

Once he started preschool they would take him in the bathroom with all the other kids and he would sit on the toilet. I was encouraged. I figured once summer hit and his two big brothers did summer school we would take four weeks to concentrate on potty training and be good to go. 

Wrong.

I'm sitting here, eight months later, with an almost five year old, who literally just decided two weeks ago he would be potty trained. Yikes. Those eight months tried my patience like no other. 

The front of my fridge is a huge sticker rewards chart and Gavyn's daily picture schedule. 

We tried smiley face charts. Sticker charts. M&M's. High fives. Hugs. Calling dad. Anything. Everything. Nothing. Nothing worked. 

The worst part about it was his attitude. I felt verbally assaulted and abused each potty trip. He would yell. Scream. Kick. Hit. Cry. It was awful. It was also unpredictable. Some days I could ask him to go potty or his timer would go off and he would happily or at least quietly go. Other days or times it was the fit. He did great sitting on the potty at school but not going. I never heard the words, "I need to go pee." from him. It just wasn't registering in his brain. Literally.

Now I know that it wasn't registering, because after his last surgery it slowly got better. The mood evened out. The trying got easier. And finally two Monday's ago he said, "I need to go pee." I calmly told him that was great and let's get to the potty. It continued all day and never stopped. Crazy. 

It wasn't fun. There was no joy in it. It was exhausting. It did grow my patience. A lot. And honestly, I was so excited when he finally got it, but mostly I was just relieved. I don't think I could have lasted another week of being screamed at and him not going. I feel like it's a dumb thing to say, but teaching him to use the toilet might have been one of the hardest things he and I have done together. And man, have we done a lot together. Every other obstacle seemed short lived compared to the last eight months. And I'm just so glad that chapter is done.

The place I can't live

I think the first year of Gavyn's life I spent in an emotional state of:

What the crap just happened. Why did this happen. How did I let this happen. What do I do now. What else can I do. Am I not trying hard enough. Is more just more. Guilt. Guilt. Guilt. Numb. Numb. Numb. Anger.

The next few years were spent thinking more of Nevin. Gavyn really stabilized after the first year. It was rough and slow but the ER visits stopped, there were no more surgeries. He really thrived until October of 2012. And in the next few years I worried about Nevin.

Would he ever talk. Would he catch up with gross motor. Did I baby him. Did I not push him enough. Was it my fault. What could I do different. How had I failed. Why would no one listen to me. Would I ever get him into the right doctors. 

2013 was our amazingly great year. Everyone was stable. Health was good. Answers were coming. Things were good.

2014 sucked. It was surgery after surgery. Doctors. Doctors. Doctors. School. Therapy. Sickness. Good things happened and happy memories were made. But overall it was a tough tough year.

And in the past (almost) five years I have grown a lot. As a person. In my faith. In the kind of wife and mom I am. The kind of friend I am. Our whole family has grown tremendously though all of this. But there is this little place that I can go to, this place that I try not to live in. Although it is a small thought, it is consuming. I find myself going there when I go out, when I scroll down Facebook, when I hear of other families, when I think of families growing up. What place is it?

The why us? place.

Oh, it is a small phrase. It is a fleeting thought. But, oh my, how destructive. 

It comes in my mind scrolling Facebook and seeing the "perfect" families with perfect kids. The ones who seem to have so much fall into place. 

Hearing of that two-year-old who potty trained in two days and doesn't even wet the bed.

The kids getting honors at their school.

The families who never get sick.

The ones who have baby after baby that are healthy and whole. 

Even the families who have a boy and then a girl. 

The people who never seem to suffer.

Why must so much suffering be placed on my family and my friends? Because let me tell you, my dearest friends have experienced their share of suffering as well. And it all makes me angry. Very, very angry. It's a place I try not to live in because it would consume me. I remind myself we all have our struggles and everyone's biggest thing is their biggest thing. I try to offer grace and not be judgmental. But some days it's really hard to do. Some days I don't want to hear about other people's perfect lives. And I have to close Facebook. I have to stay home. Sometimes I even have to walk away from people. Because I can't handle people pretending or really living in perfection. My life is way too messy for that. My families struggles are too big for that. And then I feel like we are too much. And I know that is a lie. We aren't too much. We are awesome. But we can be exhausting and we are exhausted. We might go two years without a surgery and we might have five in one year. We might go six months with no sickness and then be sick every day for weeks and go to the ER three or four times in two months. That's my life. That's my reality. And when I start to think, why us? Why my kids? I have to stop myself and remember that life is tough but we are great. My kids are awesome. And somehow we will make it through this crap. 

Some days

Some days are just those kinds of days. You know? This was my schedule today....

Wake up 6 am. I get up at six to have alone time, drink coffee, read my bible and journal/pray. I would say 50% of the time a child is already awake during this time. This morning it was Nevin. Thankfully he was happy and played trains in the playroom while I sat.

6:30: wake the rest of the crew that's still sleeping

6:30-7: my job is packing lunches, pouring milk/juice mixed with probiotic, making breakfast, passing out vitamins, seizure meds, and applying essential oils to children. Ryan gets the children dressed and corralled. Then gets himself dressed during this time.

7-7:30: get children set down to eat breakfast. Clean up the kitchen mess. Get myself dressed.

7:30: child #2 gets put on bus and husband #1 leaves for work.

7:30-8: finish getting the littlest boys ready (in case they slept in) and myself. Guzzle down coffee and generally flit around the house tying loose ends. 

8-8:15: kiss child #1 goodbye, tell him to make good choices and that I love him. Put him on the bus. Put child #3 and #4 in the car and drive to preschool.

8:30: drop off child #3 at school.

8:30-9: drive to our church in West County. Drop child #4 off at his classroom and go to my moms meeting for the next two hours. Which consists of drinking coffee, eating yummy breakfast, listening to a devotion and speaker, share life and laugh. All around relaxing and fun. 

11: pick up child #4 from classroom, buckle him in the car, take off for preschool.

Hit every light on the way to preschool. Arrive five minutes late. Be the last mom to pick up. Great. Child #3's face is pressed against the glass door awaiting our arrival with his teacher. 

11:35: have two kids in the car, pass out their lunch and water, grab a granola bar for myself.

11:40: slam on the brakes for a red light, sending kid #3's lunch flipping upside down on the floor. Convince #4 to share half his lunch. Pass out cereal bars. 

12:15: arrive at the children's hospital and fight for a parking space. Pick out the essentials for the diaper bag and purse, load them up and unload children. Hold firmly to their little hands and drag them through the parking garage jungle. 

12:20: check into the clinic and wait for ten minutes before being called back.

12:30: Cerebral Palsy clinic time. For the next two hours we see the PT, OT and nurse practitioner. They have Gav walk, run, shoes on, shoes off, up and down the hallway while making videos of him. Then they have him touch fingers to fingers to head and video that. We discuss his seizures, his recent brain surgeries, how he is doing in school, his moods, everything Gavyn. By the end he is exhausted and so am I. 

2:00: back in the car and fighting through the parking garage. Pass out granola bars, tell the hubs I can't talk on the phone, inhale a granola bar of my own.

2:20: arrive at kid #2's school, unload the littles from the car, tumble our way into the office and wait for Nevin. By 2:30 we are back in the car with 3 of the 4 children on our way to PSKids, therapy.

2:45: Somehow hit every light and arrive 15 minutes early. We totally deserve Lion's Choice ice cream cones for that, and lucky us, it's right next door. Get three mini cones and a large, spending a total of $2.15. You know mini cones at Lion's Choice are .25, right? Heck yeah! 

2:55: go into therapy and head for the bathroom, three people pee and one gets a new diaper. Back in the waiting area by 3. 

3:00: chat with speech about Nevin's speech time at school, decide she will have a pow-wow with that therapist for me. Chat with OT about Gav for a good 15 mins. 

3:20: sitting in waiting area with the littlest until 3:50.

3:50: meeting with OT and ST about boys. Nevin is great. Make a plan for Gav. Load children in the car.

4:13: on the road again.

4:30: home

Then begins the unloading of the car. Unloading back packs. Clean the mess up. Hang up the coats. Return messages. Start homework with the oldest. Start dinner. Set the table. Pour the milk. Pass out the evening vitamins and seizure meds. Organize the rest of the homework for the evening. Sit down for dinner. After dinner it's clean up time. Play time. Reading time. PJ time. Homework for kid #2. Growth hormone shot for kid #3. Bedtime for #3 and #4. Math time for #2. Bedtime for him right after. Finish homework with #1. Him to bed. Me to blog. 

8:00: kid free for two hours before I crash.

What does tomorrow bring? 6:15 am in the car on the way to the children's hospital for an MRI.

Just one of those days, ya know? 

Community

Community... I sort of feel like it's a buzz word now. You have so many different "communities" to be a part of. Church, work, the gym, school, the coffee shop, your online communities, neighborhood. But through all these micro communities that are available to us, we can lose real, true community. 

When Gavyn was born and we were thrown into the deep end of special needs, I thought we had community. In a small way we did, but not really. We had our online community, but that's not good when you need someone to bring you a meal. We had church community, but we weren't very invested in anyone and they with us. They might drop off a meal but they weren't going to run an errand or clean my kitchen. You see, that's what real community is. 

Real community is rolling up your shirt sleeves and getting into the dirty of people's lives. It's listening to the hard parts, all of them. It's cleaning their kitchen or doing their laundry when they've been sick. It's stopping by with a meal or coffee even when it wasn't asked for. Real community is about investing in others lives. It's one of the most rewarding things I have learned to do over the last five years. We have gotten deep down in people's dirty lives. It's tough. It keeps you up at night. It also fills you with joy. When you see the growth, when you see the dots connecting, it's rewarding. Being the hands and feet of Jesus, there is something to it! It does something for your soul. To open your messy house, to not clean your house so you can help a friend. Maybe grab take out for your family so you have time to make a meal for a friend who's hurting. To live in sacrificial community. 

I have invested in others lives to see them grow in Jesus. And now, when I need them, I see them investing in me for the same reason. I don't do it to get something though. I'm doing it to give something. We all need people in our lives that we can call at 3am with an emergency. We all crave and need real people, who love us for who we are, and are willing to stick around and see us grow. I encourage you to seek out those people, the people you can invest in. When you open your heart to it you will be surprised to find others doing the same for you. 

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! 😘